PSA

Some commenters touched on the subject in my previous post and I wanted to open up a thread to talk about that particular bent in the conversation.

Often, when someone learns that another person lives with some sort of medical condition, slight or severe, their first reaction is to suggest to that person some way they could make their condition better.

On behalf of all those persons, let me say: Stop.

Think.

That person has had that condition for months, years, or even their entire lifetime. You, on the other hand, have possibly heard of that condition — and possibly not! — and certainly have no experience living with it. Maybe you know someone else who has it, and maybe that’s a person you actually know fairly well (but that is a very small minority out of those who make these comments).

Which of these two people, do you think, knows a broader range of treatment options for said condition?

Don’t you think that person has already tried more treatment options than you even know exist?

And don’t you think, therefore, that such a suggestion is a bit of an insult to this person, who has, more than likely, struggled and fought with their condition for years already?

How do you think this person feels when sie has to tell you — especially if you are someone who is dear to hir, like a friend or family member — that sie has already tried that and it didn’t work, or sie has done the research on that treatment and it’s total bunk? Or that hir condition doesn’t work the way you think it does, and it’s actually caused hir a great amount of harm to try to think of it that way?

Maybe one time in fifty, you are bringing to light a treatment that this person was not previously aware of. Those other forty-nine times, you are putting this person in a bad spot, having to refuse a well-intentioned suggestion without insulting you in the process.

Certainly, you were only trying to be helpful. Sie knows that.

But maybe, if you thought about it a bit more, you would realize that if you really want to help this person, you can start by not insulting hir intelligence.

I have encountered these well-meaning people many, many times. They suggest this diet, or that exercise program, or this doctor, or that web site. But what they are doing in actuality is acting on the assumption that I have not put effort into learning about my condition, what causes it and how it works, and spent a significant amount of time looking into all of the treatment options, and continually trying new ones in an attempt to find something that works in my life.

And I know, I know you are trying to be nice. But having to confront people over and over again, especially people who are only trying to be nice!, with the facts about my condition and how it has affected my life, gets tiring after awhile, and makes me feel like a rotten jerk.

And I can tell you from experience, having talked with other folks with a variety of conditions, that I’m not the only one who feels that way.

So, again: Stop. And Think. Disability in particular, but illness in general, are subjects that are never really examined on a deeper level in mainstream society. This means that you have most likely been taught mechanisms to deal with the subjects that are very broad and superficial. But if you are serious about facing up to your own privilege and being a friend to those people without it, you will put a little more thought into the assumptions you rely upon when approaching these issues. Trust me, it will be appreciated.


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165 Responses to PSA

  1. Panopticon says:

    Thank you amandaw.

  2. XtinaS says:

    And I know, I know you are trying to be nice. But having to confront people over and over again, especially people who are only trying to be nice!, with the facts about my condition and how it has affected my life, gets tiring after awhile, and makes me feel like a rotten jerk.

    *flails in yesness to this*  Sometimes that can be worse than the original suggestion, honestly.  The part where I have to hold it all in and be patient, again, in telling someone that thank you for your suggestion but gosh almighty I already knew that.

    This is why I try to construct my advice (when I give it) as “You may already know this, but have you tried [thing]?”.  (Frex, I do tech support: “I know this is really obvious, but I have to be thorough – did you refresh the browser?”  Lets them know I don’t think they’re an idiot, I really do just have to ask.  Works approximately every time.)

  3. Kelsey Jarboe says:

    Ahh, thank you for this. I’m very tired of being telling me my options, as if I hadn’t spent almost every day of my life thinking about ways to change it.

  4. Pink Haired Cyborg says:

    Thank you so, so much. I’ve been getting this daily, and was just getting it again just before I started reading this site.

    I want to print this out and hand it out to people.

  5. manda says:

    I think the best thing to do when someone tells you they have a illness/disability is to simply ask: What can I do to make your life a little easier? Make sure that person knows the offer for help, support, or a shoulder is always available and leave it in their court. Simple as that.

    I’ve never had a serious illness or disability, but I have been pregnant twice and although they were very uneventful pregnancies, I still had tons of people – including childless men (?) and complete strangers – offering me “helpful” hints and suggestions. I only had to endure it for nine months – I can’t imagine what life is like for someone with a long-term illness or disability.

  6. amandaw says:

    manda, omg, yes. There is a very similar thing going on re: kids and pregnancy. All of a sudden your body and your child become public property. Everybody has something they feel an obligation to “teach” you, because, you know, obviously you can’t already know how to take care of your kid! We are still w/o children but I’ve seen it happen to so many friends. It’s very frustrating.

  7. Madeline says:

    Ugh, yes. Thank you for this. The worst is when the person giving the “advice” also implies that my condition isn’t even a medical problem at all … like with anxiety –

    “You just need to relax more!”

    Or

    “Oh, I get panic attacks ALL THE TIME.”

    Most of the time, these people have no experience with anything but normal anxiety. Because they have been anxious in the past, they think they have the authority to tell someone who has a genuine anxiety disorder what they should do. It’s insulting.

    I’ve had headaches before, but I would never tell someone who gets migraines that they should just take a Tylenol or “Oh, I get headaches all the time!” And I’ve sprained my knee before, but I would never tell someone living with crippling arthritis “You just need to ice it.”

    People are not as informed as they think they are.

  8. Arnold Layne says:

    Whoa! Speak for yourselves! I have a chronic heart condition, and I want to hear other people’s stories and the various treatments they or their friends have encountered. Because of these conversations, all my prescriptions are now generic, I found a physical therapy that works for me, and I discovered practitioners of osteopathic medicine.

  9. mary says:

    Oh, amanda, thank you! (Your posts have been most excellent, btw!)

    Sometimes, when someone finds out about my anxiety issues, for which I take medication, they’ll say something completely idiotic, like, “Why don’t you just calm down and do some deep breathing?” I used to get so mad that I’d reply, very sarcastically, “Wow, I’d never thought of that before! All this time I’ve been hyperventilating and never put the two together! You’re a genius!”

    Now, I find myself saying “thank you” and changing the subject, unless it’s someone who is very persistent. A couple of times, I’ve had to ask the person a ridiculous question back: “If you saw a person in a wheelchair, would you tell them to just walk already?” That usually makes them think. As you’ve said in previous posts, medical problems such as chronic pain, fatigue, and mental issues are invisible, so people don’t believe they really exist.

  10. amandaw says:

    Arnold, I very much like to hear what has worked for other people too. But given the way our society works, when another person with (whatever) tells me their experience, that means something quite different than the casual acquaintance who’s hardly even heard of my condition throws those suggestions at me.

    It’s also quite different when someone takes the time to get to know me, learn how my life goes, and some of my history. But when a person blows right by all those things to tell me how they think I could make my problems go away, it feels to me like saying, “Stop being disabled in front of me, it makes me uncomfortable.” That may not be their conscious thought process, but that doesn’t change how it actually comes out.

  11. I don’t think I’ve ever asked somebody if they’ve tried some particular technique/remedy, not just b/c it’s a bit of a dumb question (umm… duh, you didn’t invent the remedy, so why wouldn’t they have heard of it) but b/c it isn’t really my place.

    What I HAVE done is ask people “what have you tried?” in combating whatever it is they have. I do this mostly just to learn more about what their condition is and how they deal with it. I think this comes from my having worked in an after school program where we need to know the details of everyone’s conditions so that we can give them whatever medication, attention, treatment, whatever that they need.

    Just as a sidenote: For myself, I used to suffer from really bad anxiety attacks. I kept this mostly to myself b/c a lot of people I know are in the “it’s all in your head” camp. Yes, being “in my head” is usually what makes something psychological, but that doesn’t = nonexistent. Somebody should make a PSA for that one.

  12. CMB says:

    Thank you, for this post and the other one. I recently came out of a really bad bout of depression. Almost the only people to treat me with sympathy and care were people who suffered from bipolar disorders. We’d talk at lunch about how frusterating it was to hear our family members say, “Well, have you tried not feeling so sad? I mean, things aren’t that bad, are they?” or, “You just need to buck up and drink more tea!” I really dislike this “blame the victim” culture we’ve got, where problems are seen as personal failings. :/

    Anyway! Thank you! :)

  13. Tapetum says:

    Arnold Layne – at least to me, conversations about my condition, or other people’s conditions and their solutions fall into an entire different category than drive-by advice. Among other things they’re then talking to me instead of at me, which is an entirely different thing. It’s the difference between having your kid throw a tantrum in a store and having a complete stranger tell you to just smack the kid already, and having a conversation with your grandmother in which she recalls your father throwing the same kinds of tantrums and what she tried when she had to cope with them.

    I’m betting that you wouldn’t be terribly thrilled if somebody who knows nothing about you other than “chronic heart condition” were to tell you to “go to an osteopath, they’ll fix it for you”, when you’ve already been seeing one for however long now. Whereas someone who knows more about you suggesting a particular osteopath as wonderful would be a different matter.

  14. Anna says:

    Amandaw, have you tried diet & exercise? :)

    Sincerely, yes. There are a whole series of questions that come up whenever I mention my husband has a disability. They are usually incredibly rude, and none of that person’s business. And the biggest one? “Well, has he tried X?” Gosh no – we’ve just been going to specialists AROUND THE WORLD who specialise in hyper-mobile joints and Marfan’s Syndrome, but gee, your random suggestion, having heard that he has an illness, just now, is the one that will solve everything.

    *headdesk*

    There’s a difference between the folks who have known us for a while and have some clue what they’re talking about and my oh-so-helpful coworkers who also pearl clutch over the horrors of him being “confined” to a wheelchair. ARG!!!

  15. PhysioProf says:

    There are ways of sharing one’s own experiences that still respect others’ autonomy. For example:

    “I have experienced something similar. Are you interesting in hearing about it? I totally understand and won’t be insulted if you’re not.”

  16. Renee says:

    Thank you so much. People often don’t think when they are speaking to someone with a chronic illness or disease what the effect of their words are. Living with Sarcoidosis a disease most have never heard of I have been subjected to all kinds of ignorant commentary. None of it has been helpful and only served to be emotionally damaging for me. I should just print this post out and hand out to others when they think that they are experts on my illness.

  17. Farhat says:

    Whoa! Speak for yourselves! I have a chronic heart condition, and I want to hear other people’s stories and the various treatments they or their friends have encountered. Because of these conversations, all my prescriptions are now generic, I found a physical therapy that works for me, and I discovered practitioners of osteopathic medicine.

    You are in a very small minority. Amanda advise can actually be extended beyond medical conditions. People dislike being helped. People especially dislike being helped when it is unsolicited. Even when it is solicited, most people are merely wanting someone to acknowledge how hard they have it rather than receive any actual help.

  18. Daomadan says:

    Thank you thank you thank you! Yes…this!

    And also, what Madeline and others have said about anxiety disorders and panic attacks. Non-sufferers just don’t get it do they?

  19. Kaethe says:

    Yes, well, speaking for myself, Arnold, there is a huge difference between people with personal or close experience of a particular condition offering their experience, and people who don’t know anything about 1) what my condition actually is, 2) my history, 3) my experiences with sundry treatments offering me an off-the-top-of-their-head “treatment” that 1) has no clinical evidence, 2) hasn’t been used by anyone they know for a similar condition, 3) comes from a complete misunderstanding of the problem.

    For example, a woman suffering hyperemesis during pregnancy might be very interested in knowing the experiences and treatments of other women who had the same problem. But she really doesn’t want to hear every idea everyone ever had for treating mild nausea, and she surely doesn’t want to have to explain to strangers what the difference is.

    It’s up to the person with the advice to take a moment to consider whether their advice is welcome and helpful.

  20. Arnold Layne says:

    “that means something quite different”

    What does it mean? You don’t say in your comment.

    I have never got that impression from casual acquaintances. Generally, if someone knows of my condition so shortly after we were introduced, it is because I told them. If I don’t want them to know I don’t tell them. Also, if a new person does know that much of my life, then generally that is the only mutual topic of conversation we have. So I exploit it. If someone seems to want to offer suggestions, I turn it around on them and drag out every detail I can.

    Maybe we heart patients are just more sociable because we know our likely deaths are so imminent and quick, but please, don’t urge the default to be not talking. That is dehumanizing.

  21. dananddanica says:

    “acting on the assumption that I have not put effort into learning about my condition”

    Hmmm never thought about it that way. The condition i have, if thats what one wishes to call it, is a moderate-to-severe stutter. I often have friends or acquaintances ask me questions about it and oftentimes they bring up things they have recently read as there is new research coming out constantly. I’ve never had a problem with it though I hadnt thought of them assuming that I havent put the effort in. Its something that effects me pretty much all day every day and I’ve worked with it my entire life to no avail, even chose a profession in which I’d have to speak often and publicly and still its there.

    I never find comments by friends or acquantainces to be emotionally damaging or hurtful in any way, do you think people like me make it worse for people like renee who do find those comments hurtful? People could always error on the side of caution and never say a thing about anyones condition but if one guy seems alright with it and its one of those 1 in 50 shot where it helps, won’t they think they can help out further?

  22. Luna says:

    I don’t mind, “Have you tried Treatment X?” What I mind is, “You should try Treatment X”. One asks me something, and is possibly helpful. The other assumes I’ve not tried it and that it will work for everyone.

  23. CBrachyrhynchos says:

    I often think that we are often not well served by words like “anxiety” or “depression” which imply that what we are talking about is just a magnification of a temporary bad mood.

    Anxiety is what I get before a project meeting I’m facilitating. Disordered is feeling ants under my skin when I make eye contact with the cashier while buying my groceries.

    Depressed is being sad that I’m in a long-distance relationship. Disordered is being unable to let go of a completely irrational belief that my lover is dead in a ditch.

    Frustrated is the realization that a gap in budgeting means a month of lean times. Disordered is is the inability to get past the suicidal fear and onto fixing what I can.

    Stressed is having a headache that goes away with a couple of tylenol and a hot shower. Disordered is having one that pounds away for an entire week in spite of toxic quantities of painkillers.

    Anxiety, depression, frustration and stress are not why I seek therapy. I can handle those. What I can’t handle is the really crazy delusional stuff like the ants.

  24. Arnold Layne says:

    “I’m betting that you wouldn’t be terribly thrilled if somebody who knows nothing about you other than “chronic heart condition” were to tell you to “go to an osteopath, they’ll fix it for you”, when you’ve already been seeing one for however long now.”

    Similar discussions happen all the time. I just tell them that “yup, I’ve been seeing one for awhile.” No biggie. They’re just making conversation, and there is simply no need for formality like physioprof’s “I have experienced something similar. Are you interesting in hearing about it? I totally understand and won’t be insulted if you’re not.” That sounds positively dowdy.

    So what if the other person is not an expert? They are just being friendly, and I find that as an opportunity to educate. Besides, eventually the conversation drifts elsewhere on its own.

    If you don’t want to talk about it, just say so. If someone persists, then that is a different problem altogether.

  25. Madeline says:

    “Stop being disabled in front of me, it makes me uncomfortable.”

    This sounds pretty accurate. I have seen people look downright frightened when I tell them I have panic disorder. Maybe the “advice” reaction is there because they just don’t know what else to say.

    It still bothers me, though, because it’s not like I’m so excited to thrust my problems in everyone’s face. Hardly anyone I know is aware I have anything wrong with me. The few that do know because I wasn’t able to disguise my anxiety in front of them, and thus had to explain what was going on.

    Arnold, I agree with amandaw – there is a difference between casual acquaintance who hands out “advice” that 1) implies that you’re stupid and 2) reveals their discomfort with your disability and friends who know what you’re going through and are able to offer real advice from their experiences.

  26. CBrachyrhynchos says:

    Or 3) they have a political axe to grind and want to use you as a proxy for their own little political battles.

  27. XtinaS says:

    CBrachyrhynchos, wordcakes.  Anxiety is what I get before I make a phone call.  Disordered is not being able to go outside because I might have to talk to people.

  28. Ashley says:

    Thank you!

    Infertiles get this kind of stuff all the time. I’ve even got the 3 most common pieces of “assvice” from the same woman in the same conversation!

    No, seriously, “Just relax.” “Take a break, maybe your body’s trying to tell you something.” “I know this one person who went to adopt and then they got pregnant! So when you go to adopt, then you can get pregnant too!”

  29. Madeline says:

    “I often think that we are often not well served by words like ‘anxiety’ or ‘depression’ which imply that what we are talking about is just a magnification of a temporary bad mood.”

    You’re absolutely right. People through around those terms way too much: e.g., “I feel so depressed today!”

    Like everyone else, I experience “normal” anxiety. I feel anxious when I have a paper to write or think too much about the American economy. This is totally different than the FUCKED UP CRAZY IRRATIONAL I’M GOING TO DIE anxiety I get during a panic attack. Most people do not experience this anxiety at all or on more than a VERY rare basis. They also don’t experience the constant fear of another panic attack that follows me around on a daily basis and is itself another form of fucked up anxiety.

    FUCKED UP CRAZY IRRATIONAL I’M GOING TO DIE anxiety is a bit long, so we really should find a new term for it.

  30. Rebecca says:

    I used to suffer from acne and I would hear this sort of thing all the time from acne sufferers on online message boards, they said people would tell them things like “well if you’d wash your face” or “maybe you just need to wash your face more” (because washing your skin excessively is JUST GREAT for acne….IF ONLY IT HAD OCCURRED TO US!!!).
    I think the only way I would ever welcome unsolicited medical advice is if this person also suffered from whatever ailment I have, whether in the present or the past. That way they would at least know what they were talking about and might actually be helpful.

  31. XtinaS says:

    Arnold Layne:

    So what if the other person is not an expert? They are just being friendly, and I find that as an opportunity to educate.

    I can see that as being something someone could want.  Sometimes, I am in the brainspace to be able to educate others on how things affect me.  Someone says “Just don’t worry as much!”, I can say “It’s a disorder, I really don’t have that option”, and it can go from there.

    The problem starts up when the onus is on me to educate, and not on them to bloody think for five seconds before saying something either blindingly common or egregiously stupid.  This post, from what I can tell, is about trying to remind the other party in the conversation that hey, we’ll be more willing to educate you if you’ll be more willing to think first.

    (Another analogy is educating people on feminism.  Yes, I could drop everything and walk someone through the basics, but sometimes it’d be real nice if the asker did some of their own homework instead of expecting me to do all the work for them.)

    /babble

  32. Arnold Layne says:

    “One asks me something, and is possibly helpful. The other assumes I’ve not tried it and that it will work for everyone.”

    “implies that you’re stupid and 2) reveals their discomfort with your disability”

    I think this is where the disconnect lies. I don’t jump to the conclusion that someone is assuming something about me or that they are implying something. If I have doubts regarding their motives, I will ask, but generally I give new acquaintances the benefit of the doubt. Also, if I think that they think that I am stupid, I welcome the chance to learn that as soon as possible so I can avoid them in the future.

    Further, if I sense someone’s discomfort with my heart condition — and yes I get that often in the dating scene — then again, that is an education opportunity. I don’t want to shun someone simply because they do not have experience dealing with someone with my particular condition.

  33. Shae says:

    I can’t help but think that this post is pretending to clarify or rephrase what was said in the last post in a more palatable way, but the specific claims that people objected to about the last post aren’t mentioned at all in this one.

    So getting people to agree with this set of statements doesn’t invalidate their objections to the last post.

  34. CBrachyrhynchos says:

    The best way I can describe it is by pointing to Poe:

    The officers were satisfied. My manner had convinced them. I was singularly at ease. They sat, and, while I answered cheerily, they chatted of familiar things. But, ere long, I felt myself getting pale and wished them gone. My head ached, and I fancied a ringing in my ears: but still they sat and still chatted. The ringing became more distinct: I talked more freely, to get rid of the feeling; but it continued and gained definiteness — until, at length, I found that the noise was not within my ears.

    No doubt I now grew very pale; — but I talked more fluently, and with a heightened voice. Yet the sound increased — and what could I do? It was a low, dull, quick sound — much such a sound as a watch makes when enveloped in cotton. I gasped for breath — and yet the officers heard it not. I talked more quickly — more vehemently; — but the noise steadily increased. I arose, and argued about trifles, in a high key and with violent gesticulations; — but the noise steadily increased. Why would they not be gone? I paced the floor to and fro, with heavy strides, as if excited to fury by the observations of the men; — but the noise steadily increased. Oh God! what could I do? I foamed — I raved — I swore! I swung the chair upon which I had sat, and grated it upon the boards; — but the noise arose over all and continually increased. It grew louder — louder — louder! And still the men chatted pleasantly, and smiled. Was it possible they heard not? Almighty God! — no, no! They heard! — they suspected! — they knew! — they were making a mockery of my horror! — this I thought, and this I think. But anything was better than this agony! Anything was more tolerable than this derision! I could bear those hypocritical smiles no longer! I felt that I must scream or die! — and now — again! — hark! louder! louder! louder! louder! —

    “Villains!” I shrieked, “dissemble no more! I admit the deed! — tear up the planks! — here, here! — it is the beating of his hideous heart!”

  35. amandaw says:

    See, Arnold, this is the problem I have with your comments:

    You’ve got the framing *all wrong.*

    When someone does a drive-by suggestion and I get exasperated, I am not shunning them. THEY are being disrespectful, presumptuous and rude.

    I do not have the responsibility to always be receptive to questions and comments, always be ready to educate and always have a smile on my face as I do it.

    It is nice when I *do* feel up to those things. And sometimes I do. But I should not be required to.

    And anybody who is going to get their feelings hurt because they made an ignorant comment without stopping to think about it and I wasn’t perfectly cheery and bright with them, probably wasn’t going to be much of a friend no matter how I responded.

  36. Bijan Parsia says:

    When my arthritis first flared I got a lot of advice. Some I couldn’t avoid because they were family members. Some I couldn’t avoid because my behavior was necessarily different (e.g., getting up from a chair or having a cane).

    Two particular incidents come to mind as egregious: Someone telling me that my arthritis was because of my diet (and thus all my fault). (And it really had that tone!) My grandmother thinking that it was because of my pet hedgehogs (and thus all my fault).

    Needless to say, neither of these comments were remotely in touch with reality but were personally quite demoralizing and frustrating. Ok, my grandmother had her strange notions and I could make exceptions for her, but this other person, grr.

    Then there was the guy at the sushi place who saw my cane, asked what was wrong, then grabbed my (swollen, painful, stiff) hand and proceeded to “massage” it like he had a grudge against me and my hand. (It *really* REALLY hurt!) He handed back my hand and smiled “There! Feels better?” Sigh. Nothing like a throbbing hand when you want to hold chopsticks!

    Ok, these were extremes. I’ve certainly offered advice to other people based on my experiences, though I generally try to be very careful about it (i.e., I should have relevant experience; I should know enough about their situation; there should be some clear indication that experience based “advice” is welcome; and, most importantly, it generally shouldn’t be *advice*, usually, but experience sharing).

    Usually, if I’m giving advice, it’s when the person doesn’t know that their situation may have a medical cause or there may be medical help. E.g., people suffering depression. So, “Wow, it sounds like you’re having a rough time. You know you can talk with me anytime, but I also want you to know that the university provides counseling services. Sometimes, just talking with someone who you *know* is disinterested is sufficient and, if it isn’t, they are a good position to help you figure out what else to do. I found that really helpful, though I had trouble finding someone good to talk with about my problems.”

    (Thanks to amanda for raising this.)

  37. amandaw says:

    I can’t help but think that this post is pretending to clarify or rephrase what was said in the last post in a more palatable way, but the specific claims that people objected to about the last post aren’t mentioned at all in this one.
    No, I’ve done enough clarifying in that thread. This is a related but still substantially different subject. Thanks for taking the time to consider what I was saying, though.

  38. XtinaS says:

    Shae:

    I can’t help but think that this post is pretending to clarify or rephrase what was said in the last post in a more palatable way, but the specific claims that people objected to about the last post aren’t mentioned at all in this one.

    My understanding was this post was about a topic that branched out from the original topic.  Original was about acceptance (or lack thereof) of medication as a valid tool, this one is about not offering advice without thought.

    Unless I’m missing something, which is possible.

  39. XtinaS says:

    (Or what amandaw just said.  *cough*)

  40. amandaw says:

    I suppose I should take the time to specify, too, that a person can have the best of intentions, and still be presumptuous, insulting and rude. And being the latter does not make those people Bad People; we’ve all made presumptuous asses of ourselves from time to time. But their good intentions do not invalidate the frustration their comments create.

  41. Arnold Layne says:

    “When someone does a drive-by suggestion and I get exasperated, I am not shunning them. THEY are being disrespectful, presumptuous and rude.”

    No, they’re not. They are just being friendly and trying to be helpful. Disrespectful? Rude? Perhaps if they interrupted me, but otherwise, this is someone making conversation. Nobody is requiring me to do anything beyond my saying, “I don’t want to discuss that.” People discussing their aches and pains is one of the most natural of conversation topics.

    I guess my question is “How are all these people discovering your condition in the first place?”

  42. shah8 says:

    I learned alot from this thread.

    thanks

  43. melle says:

    Ashley – yes, yes, yes! Infertility is a topic that everyone seems to have “advice” on. I can’t believe how many times I’ve been told to “relax”, or “stop trying so hard”. What bothers me is how they refuse to acknowledge my understanding of my own situation. I have done so much research, had so many test, seen so many specialists, etc, etc, – I’m practically an expert on the subject. I definitely know more than my GP about it. Yet, people refuse to take me seriously when I say that I can’t conceive. They just keep coming back at me with suggestion after suggestion – as if to say that I don’t know what I’m talking about. It’s so frustrating. The worst part is that I didn’t even want to talk about it with them in the first place. People just feel compelled to find out why I don’t have children. Maybe it’s like Amanda said – they just don’t want to be confronted with someone with a problem they are not comfortable with.

  44. Casey says:

    I’ve suffered from a visible medical condition since I was 10. I’m 29 now. Over those 19 years, I have heard a vast range of suggestions and ideas for treating my condition, some of them quite strange, however it never occurred to me to become offended or insulted by the fact the person was offering.

    Sometimes, yes, it is tiring, but the fact that *I* find it tiring does not change the motivation of the person offering the suggestion, who is more than likely trying to help. So I remind myself they’re just trying to be helpful, and either discuss it in more detail (if I’m interested in doing so) or just smile and nod and change the subject.

    I actually wouldn’t want people to stop offering suggestions, even though some of them are daft, because I think it’s unreasonable for me to think that I am personally aware of every treatment possibility under the sun- I just don’t have THAT much time to spend researching, plus the nature of my condition is that there’s a wide range of treatments and some of them work for some people and some of them work for other people, so the more you’re aware of to consider and try, the better your chances of finding something that works for you. And some of the suggestions I’ve gotten from well-meaning people have been extremely helpful and NOT something I would necessarily have come up with by googling.

    Plus, when encountering OTHER people with conditions that I may know something about, I have no way of knowing what resources they have available to them. Maybe I DO know something they don’t because I have access to a different knowledge base than they do. Maybe they aren’t in touch with ANYONE else who has the condition and only know what their out-of-touch GP tells them, which isn’t the current thing. Not everyone is willing or able to spend a lot of time educating themselves.

    I would agree that there are ways of offering suggestions which are more palatable than others (“have you tried X? So-and-so has that problem and it worked well for her” comes across as much less confrontational than “you should do X”, for example) and that some people don’t know when to drop the subject (if I change the topic, that means I don’t want to talk about it!) but I think I’d have to agree with the comment that suggested that no talking at all is kind of dehumanizing.

  45. amandaw says:

    See, I do hear the concerns about restricting talk about life with a disability (or related conditions). We want people to be informed, we want conversation around these topics, most certainly.

    But I also get nervous sometimes because it can tread too close to a similar criticism that comes from a place of bad faith rather than good: “but if I can’t say [censored] what am I supposed to call them?” etc…

    All told, I’m not trying to tell anybody to shut up. Several commenters have offered suggestions for how to approach this particular topic with PWD, but you don’t even have to go that far. Just think: When you encounter person with X Condition, why should you have to tell them how you think they can fix it? Why not ask them how they’re doing? Why not learn a little bit about them? If you do want to “go there,” it can be much nicer to hear someone say: “You know, I know it’s nothing like chronic depression, but I’ve had some times where I was so stressed and falling apart too. I can’t understand everything you go through but I can relate to some extent. One of the things that helped me was to go out on a walk every day and just relish being alone and exploring new places, it was really amazing”… etc… if you have relevant experiences to share, then *share YOUR experiences* — make it about what you have gone through, not about how what you did should do the same for them.

    I definitely like the suggestion to ask them what treatments they’ve tried, rather than just telling them what you think might work. That way, you become a little bit more informed, and the two of you also build a little bit of a better relationship, and that support from you is a LOT more help than “why don’t you do (x)” is probably gonna be…

  46. Mad Librarian says:

    Oh, this is soooo true, and I would like to add that parents whose kids have disabilities, learning disorders, behavior problems, academic problems, or anything else get this ALL the time.

    The idea that you wouldn’t have moved heaven and earth to help yourself or your own child, or that some random stranger or not-very-close friend or family member knows the solution (or your child!) better than you is simply infuriating.

    A small example: my friend has a teenage son with learning disabilities. She has taken him to many doctors and specialists of various kinds, sat in on hours of IEP meetings, counseling sessions, etc. etc. A relative who has a young child just entering 1st grade who MIGHT have a learning disability called her up, very excited, and said, “You know, have you ever heard of this thing called a 504? That might really help your son!” AGHHHHHHHH!!!!!! She just wanted to scream, but how could she? The relative just thought she was being helpful.

  47. XtinaS says:

    Casey:

    Where is the comment, and I ask this sincerely, that suggests no talking at all?  I’ve seen this twice now, once from you and once from Arnold Layne, and in rereading, all I see are requests that people please think a minute before saying things like “You just need to relax!”.

    Not to mention, I dunno from others, but really I’m not talking about suggestions like “Have you tried sleeping on your side? That helped my anxiety”.  I’m talking more about people who say “Oh, you have anxiety? Just don’t worry as much!”.  They’re not sharing something that worked for them, they’re telling me something braindead-obvious to do that’ll fix me.

    I don’t have the patience of a saint, so I can only deal with that a few times (ever) before I start wondering whether everyone around me has contracted a case of the dumb.

  48. Gidget Commando says:

    Amen from the choir. I have an invisible condition (chronic migraine) and after years, finally found a treatment plan (including difficult drugs) that works well for me. I know people mean well, but when someone who suffered a lot less than I do suggests repeated that cutting out food x or yoga or something less than the hardcore regimen I’m on–from a top headache specialist, since the normal neurologists couldn’t do shit for me–it tries my patience. Thanks for the support.

  49. melle says:

    I think it also depends on how personal the issue at hand is – whether or not it’s appropriate to offer unsolicited advice. If someone asks me why I don’t have kids, I tell them that I can’t conceive. At which point they usually express doubt about my infertility, which I take at first as sympathy, and wishing me some hope. However, when people persist in asking more questions, which they do 75% of the time, it’s starts moving dangerously into the category of asking me about my sex life – the frequency, whether I lie in bed afterwards, etc. And that’s not something I want to talk about. I can imagine if the topic was hearing loss I probably would be happy to tell them everything the doctor and I discussed.

  50. scamps says:

    I’ve actually gotten this kind of treatment from my own flesh and blood. In the grand family tradition, I was diagnosed with a number of mental illnesses (the most numerous and severe in my family – a new record!). My parents and brother, well-intentioned as they were, kept giving me nuggets of “advice”. What they kept forgetting, though, was that I also have had Asperger’s Syndrome my entire life, rendering their advice to “just relax” and similar tidbits to be somewhat useless. It felt like they were attempting to be helpful, but just didn’t know how. I would rather they just admitted their lack of knowledge.

  51. Q Grrl says:

    How is it that people know about your condition? Is it because you’ve told them? If so, I don’t see offense in folks offering casual comments. Back in the old days we used to call it “empathy” and for some of the clueless we just called it “sympathy”. If someone’s comments seem over the top to you, a well placed “I’d rather not talk about it” usually works – for both parties.

  52. Arnold Layne says:

    “as if to say that I don’t know what I’m talking about. It’s so frustrating.”

    This has been a common theme throughout this thread: assuming the motivations of others, and then getting emotional over the assumption rather than the unknown motivation. That is, basing an opinion on a stereotype rather than on the actual individual.

    This theme also runs counter to the usual disability activism that advocates open discussion of our disabilities and allaying the guilt and the hesitance that the non-disabled feel about talking to the disabled. We want the non-disabled to say things in their own words because that is the only way to know what they are thinking. If they try to couch what they say in some kind of PC-speak, then we immediately jump to the stereotype level rather than keep it on the individual level.

    I have to wonder, too, if some of this reticence toward normal conversation may be another symptom of depression. I have depression, I become a nasty ogre on bad days, I think the worst of people who have shown none but good intentions. What do you think?

  53. CBrachyrhynchos says:

    Well, part of the issue is that there are quite a few health issues that have become hot-button political and moral topics, among them: mood disorders, breastfeeding, obesity, and family planning. So often the advice is just a prelude to a moralistic lecture that we wouldn’t be in this situation if we did not sin in some way, that the problem would just go away if we lived the good life, or that our strategies for dealing with the problem contribute to some social harm.

  54. amandaw says:

    Nobody is assuming intentions or motivations — I believe I have made that quite clear in my comments. A person can be incredibly sweet and sincerely want the best for you, and still say things that open wounds and create frustration. And I’m tired of it being insisted that those wounds and that frustration simply be ignored, because the commenter didn’t mean to do that.

    Well, bully, I’m sure my mother didn’t *mean* to emotionally cripple me as a child. She thought what she was doing was love. But damn if I’m gonna be told that I can’t call what she did abuse just because she wasn’t intending to abuse.

    It is very obvious from this thread that a LOT of people feel this frustration. And I refuse to let that frustration be suppressed, just because people didn’t mean to cause it. Well, they did. And they do. And maybe, for once, the people with the privilege can be the ones to consider the consequences of their actions, rather than the people lacking that privilege having to paper over those consequences, with a smile on their face the whole way.

    Arnold, I am glad you have no problems with these questions; that is great for you. But obviously, a lot of other people *DO.* And you are telling them that they are wrong for feeling that way.

    Not every person should be obligated to always be on hand for education and reassurance for the egos of those privileged and ignorant, and not every person should be obligated to always be bright and cheery about it, lest they alienate a clueless commenter. They aren’t the ones doing the alienating.

  55. PhysioProf says:

    I do not have the responsibility to always be receptive to questions and comments, always be ready to educate and always have a smile on my face as I do it.

    Damn straight! You’re the motherfucking blogger, it’s your world, and the motherfucking commenters are visiting it. If they don’t like your world, they can damn well start their own. IT’S FREE!!

    http://www.wordpress.com

  56. SarahMC says:

    The problem starts up when the onus is on me to educate, and not on them to bloody think for five seconds before saying something either blindingly common or egregiously stupid.

    Yessss!
    I have an invisible condition – chronic pain – and I get ignorant, “helpful” suggestions on occassion.
    How do people know about it, some of you ask? Because they might see me handling one of my numerous pill bottles and ask me what’s wrong with me. Or they will ask why I had a doctors appointment that day. Or I will tell them my back’s been bothering me, which is why I can’t do X or don’t feel up to Y.
    Offering unsolicited, boneheaded advice that comes from a place of ignorance is NOT the only way to make friendly conversation. Geez. What’s wrong with, “Oh, how do you deal with that?” or “Is there anything I can do to make things easier?”
    Unless, of course, your intent is not to help but to avoid awkward pauses in the conversation.

    (And everything I wrote about above is completely different from a friend or relative printing out an article about a new treatment they read about, or telling me they heard about a remedy for a side effect they know I’ve dealt with.)

  57. Kristen says:

    Eh…could we extend this PSA generally? (Not that I’m attempting to derail or say that other problems are as bad/worse…just that the advice is generally applicable)

    I mean can’t we say the same for people who criticize/comment on the fact that I don’t have kids? My decision to eat organic? That I send my dog to doggy day care? Or god forbid that I’m a “sparkle” feminist?

    The issue is respect. In [nearly] all situations we should trust that other people are in the best position to know, understand and make decisions about their own lives.

  58. scamps says:

    CB, that is a fantastic point.

  59. ACG says:

    Arnold Layne – I certainly understand good intentions, and I’ve certainly done annoying things myself with the best of intentions, but here’s the rub (and to be completely blunt) – I don’t care. I appreciate that Person X is just trying to help, but it’s annoying. And just as Bijan Parsia’s unwelcome hand massage was given with the best of intentions, unhelpful and unsolicited advice is still annoying despite good intentions.

    I make no secret of my depression/bipolar disorder or my bulimia, because I think mental illness is stigmatized and made into something we should be ashamed about, and I’m not ashamed. But when someone says, “Ohmygod, I know how you feel. When my boyfriend dumped me, I was depressed for, like, three days. I went running with my dog, though, and I totally felt better,” it’s a sign that a) they don’t understand at all, and b) they seriously think that I’ve spent over a decade of my life dealing with paralyzing spells of depression and exercise just hasn’t come to mind.

    Even if they just said, “Wow, that really sucks. What have you tried?” I would feel better, because then I could explain a little about my condition(s) and tell them what’s worked for me. But unless you would say to a person with a broken ankle, “Wow, that looks bad. You should put some ice on that,” telling a person with arthritis to take a nice, hot bath is probably a bad idea. Even if you mean well.

  60. Tapetum says:

    Arnold – did you really just attempt to diagnose a dozen complete strangers with depression on the basis of an internet thread?

    Open discussion of disability and the like is generally wonderful. Mandatory cultural educator status for every disabled person not so much. Some of us are depressed, or socially anxious, or simply extreme introverts.

    To repeat XtinaS – who’s suggesting not talking at all? Suggesting that the people who aren’t disabled put a bit of thought into it before they start spouting off advice is hardly massively onerus.

    As to how people know about our conditions. Lots of reasons. Some aren’t invisible. Some affect behavior, even though they’re otherwise invisible. Some have other effects that people comment on – like the memorable conversation of somebody calling me a “pathetic, lazy, lard-ass”. Interesting catch-22. I could either let him continue making rude, ignorant comments about my weight, or I could tell him he was yelling at me for daring to have an endocrine tumor and (apparently, based on the argument here), give him every right to weigh in on my treatment options.

  61. melle says:

    Arnold, I do get what you’re saying, but I can’t help but think that we might be talking about different things. Maybe certain disabilities lend themselves to more (or different types of) “stranger advice” than others? I enjoy talking to people about my condition when they have some understanding of their own, or when they want to actually listen to what I have to say – that is, to have an actual discussion. But many people without an understanding of infertility feel the need to throw one piece of advice after another at me, even after I make attempts to assure them that I’ve tried these things. I’ll say things like, “I’ve seen several specialists, and received second and third opinions, but I have a genetic condition which can’t be cured”. To which they’ll say, “Nonsense! Have you tried lying on your back after sex for about 30 minutes?” At this point it’s not a discussion, it’s just some desperate attempt to make my situation go away. Now, that may be because they care about me, or because they are uncomfortable with me, but either way it stresses me out.

  62. Jade says:

    I have seen this happen with my father who passed away from cancer very recently. It got so bothersome after he entered hospice care when his well-meaning friends kept suggesting we do this or that, or test him for this ultra-rare disease that my uncle has, even though his disease has no genetic component and only 300,000 people in the US have it. Plus my father was miserable 24/7 and spent his remaining months of life battling constant nausea and vomitting. He had good days and bad days, but his friends who were busy with their own lives and not around as often as I was (as in, not there every single day like me) would try to offer different types of food or suggest he do this or that never once seeming to think I had dared suggest anything or hadn’t listened to what he wanted. Dad appreciated their intentions, but I think we all became distressed over this at one point or another. It hurt so much to see my father ready to let go and to see his friends desperately trying in vain to save him.

    I’ve also seen this crop up with a couple of friends who struggle with mental illness. One of them vented in her journal and had to finally filter out people because she only wanted to vent, not have people throw suggestions at her. She knows what she needs to do and what does and doesn’t work for her, other people don’t.

    I think for some people they want to feel like they’ve done something to help a friend or fellow human being who has suffered. It’s hard to watch a friend go through illness of any kind and not be able to do something. However, what you said is right on the money. I wish more people would sit back and think before making any suggestions.

  63. dananddanica says:

    so basically a lot of the time this is coming down to the issue of intent vs. impact? That genuinely nice person who is just trying to -help- has a good intent but is unaware of the impact, makes sense. the only problem I have with it is that the impact is never known beforehand, the true intent rarely so. we could limit speech in a lot of ways if we all became truly aware of all the issues we face as a people, what would we talk about? Its hard for me because that intent of trying to help, while in the cases described in this thread having had negative outcomes, so often has a positive outcome. Most times someone suggesting i try and slow down while speaking is no more hurtful to me than discussing the weather, just something people do when trying to fill dead air or try and appear/be nice.

  64. Liz says:

    I fall on both sides of the fence, because after a year of depression with psychosis, I knew more about it than most of the medical professionals I was dealing with- I’m a medical professional myself, btw- and it was intensely frustrating to deal with relatives, doctors, well-wishers and assorted witnesses to my disintergration. Often the suggestions were along the lines of “focus on the positive” or “improve your sleep hygiene” or “try taking some deep breaths”. Because those help when dead people won’t stop screaming at you and demons are hiding inside your friends.

    Their comments felt like they had no understanding of the severity of the issue, and no desire or interest in my story beyond what matched their understanding and fit in with their ideas.

    Others would make similar or identical remarks. But it wasn’t discomfort or contempt or an unwillingness to accept my mental illness behind it. It was love, concern, empathy. It came out clumsily sometimes, but it was not the unsolicited advice that was the problem.
    Those are the ones who actually listened to my replies.

    The first impulse was to help. Often the help was unneeded, sometimes it was necessary. Without the human connection that came out of it, I do not think I would have survived my recovery.

    Obviously, my disability is a hidden one and one of limited duration, so my experiences are very different than those of others. But for me, it was better when people engaged with my illness instead of avooiding it, and the way that came through was advice. Lots and lots of advice. I took some, ignored most, and tried to only get mad when it came with a side order of judgement, stigma, critisicm or refusal to acknowledge my response.

  65. Wow. Having previous thread dealing with the medication question, and now this one dealing with the “driveby advice” question, my head feels full. (I didn’t get much work done today, huh?)

    Arnold, I think you’re getting kind of a bad rap occasionally, reading all this. You seem like a very open-minded person, which it sounds like what “we” all hope for in conversational partners.

    After reading everything in order, here’s what I noticed: “Assuming the motivation of others” started out directed at the commenter in the previous post who suggested figuring out WHY one isn’t sleeping before one jumps to sleeping meds. It seems to me, too, that other comments lamenting “driveby advice,” whether in text or in person, follow that theme. This sort of “advice” can provoke the mental reflex of, “Do you actually know any accurate information on this subject??”

    Personally, I get very frustrated regardless of intention when I hear ignorance about anorexia, which I used to have. Someone can have the best motivation in the world, but if she asked me-five-years-ago if I’d tried simply letting myself eat more, or if I had thought about *why* I wanted to be so skinny and stopped thinking that way, I would have rolled my eyes all the way back into my head from the incredulity. These days I’d be more inclined to ask her where she was getting her information on eating disorders, and had she considered updating her sources; and would she like a firsthand perspective? Or I might just shrug and change the subject.

    Regardless, I empathize with the frustration of having to deal with (what feel like) ignorant comments in the first place. I guess the best way I’ve found to deal is realize that people will ALWAYS have something to say, and I don’t have to pay much heed, if I don’t want to.

  66. dananddanica says:

    tapetum- no i dont see it as especially onerous either but when combined with everything else, every other issue brought up on this blog and others, it would seem to become onerous to those privileged in multiple ways. i do find it interesting though what conditions are held up the most for ridicule, most open to be discussed, most likely to end a conversation, it touches on so many other things.

  67. Bijan Parsia says:

    Reticence to “normal conversation”? What?

    Arnold, I don’t know what thread you’re reading, but there have been several examples given in this thread in which the behavior, whether normal or not, is just clueless, hurtful, and counterproductive. Telling a depressed person to “just cheer up” or an anxious person to “just relax” is basically telling them that they are faking it or doing it to themselves. No matter how innocent or well meaning the intention, that’s what they’ve said. Stop doing it to yourself. (Note that this extends to quite obviously, undeniable “real illnesses”…my grandmother *knew* that my father and brother had arthritis and yet was looking for things *about me* that were at fault. Now, obviously, she wanted it to be something simple and fixable like a pet of mine that she didn’t like. But, uhm, this is still obnoxious behavior!)

    I’d be really surprised if the usual disability activism advocated letting people be clueless, insensitive, or jerky, however good their intentions. I would think that the usual disability activism would advocate people learning about disabilities and trying to make reasonable, respectful accommodation. I fail to see why “Just cheer up” is any less offensive than “Must suck being a crip”. Both are better than “You are a waste of space” and may be said with good intentions.

    Surprise surprise, it’s actually possible to figure out how to interact with people in a decent way. Perhaps you’ve been lucky to only have interacted with such people or perhaps you just react differently. I assure you that with my grandmother, my self-proclaimed nutritionist, and with the sushi guy, I didn’t scream in their faces or spit in their coffee. I didn’t exactly lie to the sushi guy, but I did conceal just how much my hand hurt after his “treatment” (a lot; for the rest of the evening).

    Is it really so burdensome to ask people, in general, to think a bit about how they interact with people? Really? To try to make judgments? To get to know a person before giving advice? Is discussing, mentioning, or *exhibiting* my illness really an invitation for anyone to provide medical or other personal advice?

  68. Arnold Layne says:

    Where are these feelings of obligation originating? They are not coming from the other person.

    If a casual statement opens wounds and creates frustration, that is no one’s fault. If you choose not to suppress the frustration, that is your choice, but the other person still is not guilty of any breach of social etiquette.

    The privileged cannot consider the consequences of their actions if they do not know that an otherwise innocent remark may cause hurt feelings. That is not normal human discourse. Responding to that remark with “I don’t want to talk about it” however IS normal human discourse. Most people will understand, and if they don’t, then like I said, that is altogether a different issue.

    Hell, I can get just as grumpy at the first person wishing me “Good morning” as I can at the fifteenth, and an irritable “Yeah, yeah” from me gets me the distance I want. No one is going to get pissed at me, and if they do, fuck ’em.

    “They aren’t the ones doing the alienating.” Actually, it sounds like they had already alienated themselves prior to the conversation. I have certainly been there and done that.

    Anyway, like I said, this all sounds similar to my feelings towards others when my depression was unchecked, so I do have some empathy for your perspective, and yeah, I hated it too when other depressives told me, “It’s just the depression talking.” I mean, like, what do they know. Eh?

  69. Zar says:

    Goddamn. If I had played a drinking game of Every Time Someone Suggested Exercise As A Cure For Depression my liver would have imploded already. Yes, I exercise. No, really. NO, REALLY. Some of my very, very athletic relatives suffer from horrendous depression, actually. But thanks. Telling me I’m lazy and fat is really going to make me feel better. Dicks.

  70. Arnold Layne says:

    “You’re the motherfucking blogger”

    Um, physioprof, I think she was talking about real world interactions.

    Speaking of which, it’s getting time to cruise happy hour. So, TTFN.

  71. amandaw says:

    I go to try to take a shower and I come back to this.

    Anyway, like I said, this all sounds similar to my feelings towards others when my depression was unchecked, so I do have some empathy for your perspective, and yeah, I hated it too when other depressives told me, “It’s just the depression talking.” I mean, like, what do they know. Eh?

    Wow. Fuck you.

    I’ve been trying to talk to you with respect and care because you seemed to have an open mind and to be coming from a sympathetic place.

    Go figure, you end up being a total asshole.

    Sorry, but I don’t want to hear anything more from you in this thread. S’my post and I get to moderate it, and your comments are unacceptable.

    For your information, I HAVE dealt with depression and anxiety, and they are already being treated quite well, thank you, and you still sound like a total dipshit.

    Fuck off.

  72. amandaw says:

    To the other commenters who have been trying to have a respectful conversation about the issue — you are fine.

    Arnold has been deliberately ignoring statements that make my positions quite clear (even, in one comment, saying I didn’t explain what I meant by something, when he pulled the quote from the middle of my explanation!), and not even just me: people have been detailing their experiences with these clueless suggestions, whether it’s a drive-by or from a loved family member, and Arnold continued to define the issue in a way that completely erased those experiences from the picture.

    And I don’t have much of a tolerance for disingenuous nitwits.

  73. amandaw says:

    BTW, this is a common tactic used by emotional abusers: likening disagreement to mental illness, or hormones, or some other mental health issue. It defines the issue such that your own thoughts, opinion, and agency are completely erased.

    It screwed me over when my family did it to me as a child, and I’m not going to sit here and blink innocently and give the benefit of the doubt to someone who is pulling that shit on other people here.

    This sort of behavior is despicable.

  74. JetGirl says:

    Thank you! I have had rheumatoid arthritis since I was a child. It’s most obvious in my hands, but I also start limping after I’ve walked for a while.
    I’ve had to deal with plenty of rude enquiries — “what’s wrong with your hands”? To downright denials that I have what I have “it’s impossible! only old people get arthritis!”
    But the worst has to be the strangers who offer massages, herbs, or grill me about my treatment and why I haven’t considered surgery. Why is that any of their business?
    Yes, I have a disabling, progressive illness. Yes, I am doing everything I can to keep it in check. But that is not all that I am. I have many other virtues and vices. And no, I don’t see myself as a victim, so cool it on the “awws” of pity.
    And the thing is, unlike some of the commenters here, I don’t have a choice about keeping it private. My deformed fingers and toes do the talking for me. So I am all about the “keep your advice/anecdotes about your grandma with arthritis to yourself unless I specifically ask you” PSA.

  75. What Physioprof said.

  76. “Goddamn. If I had played a drinking game of Every Time Someone Suggested Exercise As A Cure For Depression my liver would have imploded already. …But thanks. Telling me I’m lazy and fat is really going to make me feel better. Dicks.”

    Teehee. Zar, you’re my new hero. And you’re also right!! I have certain in-laws who looove to tell me that exercise will really improve my “outlook.” I have spared them the explanation that one of my eating disorder “symptoms” used to be overexercising. I haven’t shared because I’d rather keep that detail to myself, but sometimes I get some (petty) enjoyment from fantasizing about the foot-in-mouth syndrome they’d suddenly come down with if I did share.

    Oh my God, you’d think exercise were the cure for brain cancer the way people recommend it for illness of every kind. (Not that it isn’t great. It is. But it’s not the Be All End All of panaceas.)

  77. shadocat says:

    What JetGirl said; and thank you!

  78. ajollypyruvate says:

    For me, it’s not just unwanted advice, it’s also wildly inappropriate advice. I have systemic lupus and have resolved to stop being even frostily polite to people who tell me I should take echinacea “because it’ll boost your immune system!”.

  79. annaham says:

    Hell, I can get just as grumpy at the first person wishing me “Good morning” as I can at the fifteenth, and an irritable “Yeah, yeah” from me gets me the distance I want.

    How, pray tell, does a pretty neutral statement such as “Good morning” relate AT ALL to “suggestions” from ostensibly well-meaning able-bodied people to those of us with disabling conditions?

    Oh, wait, I know! It has nothing at all to do with the topic at hand. It’s pretty clear to me that you, Arnold, don’t get it.

  80. Charity says:

    “Where are these feelings of obligation originating? They are not coming from the other person. If a casual statement opens wounds and creates frustration, that is no one’s fault. If you choose not to suppress the frustration, that is your choice, but the other person still is not guilty of any breach of social etiquette.” – “Arnold Layne”

    First, may I say, word, amandaw. I think you were more than patient with Arnold. His statement I have quoted above is one I find quite ironic, given that his own response to people expressing “frustration” with him was to accuse them of getting “emotional” and then of being depressed. For someone so adamant that no one is obligated to take something in, he certainly seems preoccupied with others’ obligation to take HIM in. Not that this is the ONLY thing he’s missing, but I think he (and possibly others) may fail to recognize the additional layer that may add to the frustration for many of us here, which I am strangely sad no one has mentioned: women are generally not socialized to assertively say, “I don’t want to talk about it, thnks” to well-meaning strangers, people in authority, people who seem “well-meaning,” etc (and are not rewarded for doing so). Women are socialized to comply, to respond carefully, to be humble, to be polite. Women face unsolicited input, advice, comments, judgments, etc., all the live long day (“Smile!”) about our appearance, mood, behavior, carriage, what have you, and it is NOT always well-meaning, and even when it purports to be well-meaning, it is exhausting and cumulatively damaging. I think all that quite understandably adds to the resentment of having one more layer of *I am going to tell you what to do / what is really wrong / what I see is the REAL issue, because I feel entitled to do so*.

    Not to negate the experiences of men with disabilities, particularly those who DON’T feel like Arnold does, but I think that may be one piece of what Arnold specifically is missing here.

  81. Karrin Jackson says:

    Thank you. I’ve had trouble articulating this in the past, and your post has been very helpful in that regard.

    The problem I run into with the heartfelt attempts to cure me, especially when they are sincere, is trying to get the person to understand that if I want to live any kind of functional life, I cannot allow myself to get wrapped up in the newest, latest fix.

    While I do think that a positive attitude is necessary to survival, I have got to remain grounded in the reality that, until a real cure is found, this is forever. If I lose sight of that, I lose what little edge I have to get through the day. No, that doesn’t mean I ‘would rather just be sick.’ It means I would rather be able to function within the life I’ve got rather than constantly chasing after pipe dreams and existing between the states of unrealistic hope and crushing disappointment.

    As for just being nice, here’s a thought. If you want to be nice, instead of offering unsolicited advice, ask if there is anything you can do to help. Find out what the person needs from the source. If you’ve got advice, ask first before you offer it. Respect your friend’s right to say no thank you, and don’t take it personally if your well-meant ‘help’ isn’t received as the greatest revelation of all time. Chances are they’ve heard it before.

  82. William says:

    Amandaw- Great post, blah, blah, I’m the umpteenth person to point that out so I’m not going to bother saying anything original and just point to the people who said it better.

    CBrachyrhynchos-

    I often think that we are often not well served by words like “anxiety” or “depression” which imply that what we are talking about is just a magnification of a temporary bad mood.

    You’re completely right. I don’t think we consider what words mean enough, especially when we’re talking about mental health and illness, and depression is a great example. Sadly, this isn’t really a new problem. Freud wrote an incredible essay on the subject nearly a century ago (“Mourning and Melancholia”) focusing on what the difference is between being sadness and depression. In particular he focused on why, though the two states look similar from the outside, the roots of depression are very different from the root causes of sadness. It ought to be required reading for anyone going into the medical, mental health, or social service fields.

    To continue your theme: being sad is crying because you woke up and discovered your dog died. Being depressed is wanting to cry because you woke up in the first place but not having the energy to do so.

  83. Madeline says:

    “it’s impossible! only old people get arthritis!”

    My mom got arthritis at the age of 19, and she got this all the time. Ironically, now that she IS getting older, people make remarks like, “Well, it’s all part of getting old!” when she has trouble walking. Except, no – she’s had this condition since she was 19 and it has nothing to do with age. They trivialize her problems in this way in order to comfort themselves … if they make out her crippling pain to just be “part of getting old,” they don’t have to acknowledge the fact that she lives with a terrible condition that is NOT normal or part of the aging process.

  84. amandaw says:

    My physical therapist was very visibly surprised when I told her my fibro was diagnosed at 12. “I’ve never heard of anyone getting it so young!”

    Of course I was lucky, because my mom had it, so she knew to keep an eye out for it in me. If I hadn’t had that, I might still be floundering around now, ten years later, without a helpful diagnosis.

    As far as the fun stories, I quit one job at a restaurant after the asshole mgr wouldn’t let me go home one day when I felt seriously awful, even though another worker was BEGGING him to let me go, and had volunteered to cover for me — and when I told him “Look, I’m in a lot of pain” he told me “Honey, I’m fifty years old, I hurt a little sometimes too”

    and I sat there, totally stunned. Just, w-wha?

  85. Molly says:

    Can I just say, your guest-blogging pieces so far have been fantastic. I rarely notice a guest blogger’s “thread” enough to go get the RSS feed for hir actual blog, but every post of yours has made me remember the previous one, and the one before that, and the one before that. They’ve all been stand-outs. I’m going to go poke around your blog’s archives now!

  86. aram says:

    I’ve had red, itchy eyes (ok, so not the worst thing in the world, but hopefully illustrative) for two years, and have been trying various treatments with varying degrees of success. When people ask about my eyes (e.g. “have you just been swimming?”), they get embarrassed when I tell them it’s a long-term problem. I don’t mind the questions at all, but I do find that their embarrassment makes things awkward.

    On the other hand, semi-unsolicited advice from my friends has sometimes been useful, and helped me find better treatment. More often not, but even hearing more case studies is interesting to me. Even totally asinine advice at least signals that the person cares about me.

    So I don’t think you can say categorically that these comments are rude, or shouldn’t be made. Looking at the invisible illness bingo link, I think the issue is whether the comments are made in an empathetic and compassionate way, or whether they are contemptuous and blaming.

  87. Karrin Jackson says:

    “Honey, I’m fifty years old, I hurt a little sometimes too”

    I got a line like that when I was working in a nursing facility. I’m not a violent person, but sometimes I wish I had a tire iron to simulate exactly what ‘hurting a little sometimes’ really feels like.

  88. Sarah says:

    Shorter Arnold: “*I* don’t have any problem with this stuff. Maybe you ladies are just hysterical? Try taking some deep breaths and not being bitchy. And smile.”

    In other words, thanks for kicking him out amandaw! ^^

    Having had depression/whatnot has made me better about the whole unsolicited advice thing, personally. It’s also been helpful in making me more effective and sympathetic in regard to somewhat unrelated problems. For example, I was walking with my friend one day a couple miles from where we live, and she said “Oh crap, I’m getting a migraine.” Within minutes she was in pain, and literally lost about 3/4 of her field of vision. I helped her unwrap some painkillers (she couldn’t coordinate her fingers well enough, or focus) and linked arms with her to help guide her home (warning her about obstacles, etc.)

    She was astonished when I was basically like “okay, let’s go” and helped her out with no questions. She told me that no one had *ever* believed so quickly that she went blind from her migraines. *I* was startled about that; the way I saw it, her brain was doing something crappy, she told me about it, and I helped her out. It didn’t occur to me for a second that she was not reporting accurately, or that invisible = not-a-problem. Without the experience of depression and childhood panic attacks (and, like I said, “whatnot”) I might not have been able to so easily accept her situation, and effectively aid her.

    In conclusion, depression has made me a better person. Woot, go me. :p (Just wanted to throw out something a little positive.)

  89. Sarah says:

    As for unsolicited advice to me from others, I’m lucky in that I have nearly 100% invisible problems. If I don’t want someone to know about my mental health, I can usually be pass it off as “oh, I’m just tired tonight” instead of saying I can’t bear to be social at the moment or “I’m just a perfectionist” instead of mentioning my mild OCD. For some reason, I get a lot less of the “just try not to be a perfectionist!” than I do “just try to stop picking at yourself!”

  90. scamps says:

    amandaw, your work story reminds me of the shite that I went through at one job at a now-defunct retail store. I had this one supervisor who had the nerve to tell me to “keep my personal life at home”, when, in fact, mental and developmental illnesses do in fact affect your ENTIRE life.

    My (unintentional – I’ll get into that later) last day there, I happened to be starting a new medication, and I was dizzy as a side effect. They had me standing in front of the store all day with no break and nothing to prop myself against. At one point, a more empathetic supervisor assigned me to register, so that I could lean against the table whenever I needed to. Not a minute later, Head Asshole comes out and yells at me to get back on the floor, even though it was HIS supervisor that put me there.

    At the end of my shift, they told me to take the week off. I come in a week later, and they tell me that I was fired because I missed three shifts – shifts that they never notified me about, even when I called earlier in the week! After some consultation with the disability rights group at my husband’s office, I learned that I had certain legal rights and could have taken them to court, but of course I was too poor and chickenshit to go against a store headed by a major communications group.

  91. amandaw says:

    scamps,

    my husband expresses regret to this day that he didn’t look into getting a lawyer after I left that same restaurant job. I was a greeter and I asked them if I could have a stool to sit at the podium when I wasn’t moving around the restaurant helping people. They refused, saying “If we let you sit then everybody else will want to” and so it was. I had to stand.

    The ADA calls for reasonable accommodation. Considering it’s established convention in restaurants for the host(ess) to HAVE a stool to sit on at hir podium, it took some kind of gall to tell me I wasn’t allowed one for the very same job.
    They needn’t’ve provided me with a Segway to zoom around on, or something, but a stool (which I was even willing to buy myself!) is not an especially freakin’ hard solution for my problem. It wouldn’t have cost them a penny and, again, it’s not like it would have looked out of place either!

    My suspicion is that a LOT of that shit goes completely unprosecuted, or even entirely undocumented, just because we already have enough going on in our lives and can’t handle the additional stress it would be to try to push the issue.

    I think a lot of people don’t understand exactly how much resistance we face just in living our everyday lives…

  92. The “Have you tried x” utterances I find myself making tend to be motivated by a “I thought it sounded way too simple too, and then I was surprised to find,” type of experience.

  93. Jesse says:

    I’ve lived with schizophrenia for 11 years. Once, a graduate teaching assistant, after I’d been walking myself to the campus mental health services for two months, said I should “get on antidepressants.”

    Anyhow, water under the bridge. I’m commenting to say that I feel you’re being charitable. People, perhaps even especially in the US, who live with chronic ailments of any kind, are acutely perceptive and generally much more aware of World Reality, while the Dumb Lucky Extroverts continue to feel that they know better, just because.

    I think this blog: stuffwhitepeoplelike.wordpress.com, covers it nicely in one of their entries: Making Other People Feel Bad.

    Down with dumb luck!!

  94. scamps says:

    I once read about how the majority of possible ADA accomodations cost little to no money and time. In your case, if the restaurant had a bar, then voila – stools ready for the taking! Plenty for you AND the other hostesses, should they want one.

    You’re probably right – I wouldn’t be surprised if disability discrimination in the workplace occurs more often than reported. Too few workers have knowledge of their rights. The ADA covers a lot more than just the outright disabled, but also the temporarily infirmed.

  95. I get a lot less of the “just try not to be a perfectionist!” than I do “just try to stop picking at yourself!”

    oh. my. god.

    ive seriously never met another picker. dermatillomania sucks. but having people act like youre just doing something uncouth like picking your nose or biting your toenails in public sucks even worse. to tell me to “stop picking” is just as stupid as me telling you to “stop breathing”

    i had a friend who would actually grab my hands to try to get me to stop. every time he did it i fought back the urge to punch him in the balls.

  96. NancyP says:

    It might be annoying, but there is some reason to gently suggest “have you considered that you might be depressed”? ..grumble..No shit!…”I’d be glad to listen, and glad to help you (look for a doctor)(learn a little more about depression treatment)(find an AA)(etc).” Or consider the practicalities, for the markedly disabled depressed having trouble leaving bed/apartment – “I’ll walk the dog in the evening, if you wish”.

    Depressed people often JUST DON’T HAVE ENERGY to do these things. Or, they think that “it’s no use, nothing will get better”. Listening, prodding, acting are all things that friends and family can and should do.

    This is different from someone who doesn’t have a mood disorder and is completely capable of doing the research on their disease. But even then, if you have a good nursing tip, it might be welcomed, if it isn’t already hugely obvious.

  97. William says:

    Shorter Arnold: “*I* don’t have any problem with this stuff. Maybe you ladies are just hysterical? Try taking some deep breaths and not being bitchy. And smile.”

    Even shorter: Women disagreeing with me is so stirring that I behave in the way I accuse them of behaving.

  98. NancyP says:

    Oh, and the biggie that family and friends can do for the seriously depressed person. JUST BE THERE. Presence, without words, can be sustaining. Even, or especially, a pet can do this.

  99. scamps says:

    William: Bravo!

    NancyP: I don’t think I could survive being alone all day without my kitties.

  100. natmusk says:

    We had a similar discussion about intent vs. impact earlier on asking DV victims “Why did she say”

    I believe the same goes for this. I am one of the lucky ones that has had very good health both mental and physical but I have many friends who have not been so lucky. I feel that occasionally, people that do n’t have disabilities or other physical problems have no concept of the over-reaching impact they have on others life. They’re not talking about a headache. they talking about continuous symptoms that affect many areas of your life. I also agree that it is up to the privileged to educate themselves, not to be educated as well.
    Also, on the personal level, if someone mentioned to you in side conversation that someone in the family has passed away, or that they are in a divorce or other such things you will not find people being like “oh did you try this funeral home, are you haivng them cremated, have you thought about food for the wake.” etc. People just don’t seem to view disabilities as personal and over-reaching and I feel that effects how they react.

  101. Madeline says:

    jessilikewhoa – I have dermatillomania too. When I was younger I was ashamed and thought I was the only one who did it … I was some sort of weird, crazy, perverted person. Since I’ve looked around on the internets a bit I’ve found a LOT of people who have it. I even read somewhere that one in four people with OCD have some level of dermatillomania.

    And yeah, it’s hard … my mom says, “Just stop that!” but it’s not that easy. As I’m sure I don’t have to tell you, it’s an incredibly strong compulsion. And I’ve had it since I was seven – if it was as easy as “just stopping” to get rid of it, I would have gotten rid of it by now.

  102. Tapetum says:

    NancyP – true enough regarding depression. Without good friends in college, I’m somewhat doubtful I would have survived to graduate, let alone to eventual treatment.

    Ironically, I have been accused of being depressed far more since kicking my actual depression than I ever was when I was depressed. Now that my moods are healthier, I will protect my alone time (I’m pretty thoroughly introverted), and snarl at someone whose pissing me off. When I was depressed I didn’t think I was worthy of protection, and I certainly would never have snarled at anyone – they were all so much more worthy of decent treatment than horrible, sucky me!

  103. Lis says:

    I just got directed here by a friend and I want to say thank you so much, amandaw. I’m just now getting my mobility issues addressed, and since I’m making it more visible (having a stool/cane) the amount of stupid advice I’ve run across is a little staggering; I can’t decide whether or not it’s more annoying than the people who are visibly upset and bewildered that I have a problem that can’t be easily fixed and won’t go away for a long time, if ever. If I’m generous, I can understand that they don’t want my life to suck – but on another level, it feels like they want reassurance that no, horrible things don’t happen to good people and the disability monsters under the bed won’t get them, and they’re disappointed when I can’t.

    Both are irritating for a reason that hasn’t been brought up yet – if somebody suggests something I’ve already tried with little effect, it hurts to be reminded of a solution I invested a lot of hope in that turned into a dead end.

    (My employers did fire me for needing a stool while cashing. My friends prodded me into contacting the local Human Rights Commission, and I’m so happy I did. Hopefully it will make things easier for the next disabled person they hire)

  104. jess says:

    Generally, if someone knows of my condition so shortly after we were introduced, it is because I told them. If I don’t want them to know I don’t tell them.

    My hypothyroidism and depression don’t often come up in casual conversations. But I know I have experienced these kinds of comments.

    The absolute WORST was when I went to see an endocrinologist who basically told me to “think positively” because I looked healthy even though I was sobbing in her office. Yes, my illnesses are invisible, especially to (non-psych) doctors it seems. But jesus christ!! Ugh, it still makes my blood boil. However, she is the one who referred me to an accupuncturist who I saw weekly for several months, in which time I felt much much better!

  105. Bonn says:

    When I was diagnosed with my illness 6 years ago, my mom and my friends were all very quick to say, “You should eat ____.” Because, you see, my illness is digestive. So it HAS to be all about food … right?? My mom goes further, however, because she’s firmly convinced that any illness can be cured with vitamins and exercise, and that while OTHER PEOPLE and their children get horrible diseases, her children do not. So my brother’s depression? Vitamins and exercise. And stop acting so depressed all the time!

    And it never even matters what my doctors say. My GI doc told me I should be able to eat whatever I want. Yet my mother still persists in the, “Do you think it’s food??”

    And don’t get me started on the helpful “YOU SHOULD JUST HAVE A BABY!” advice for endometriosis. When from what I’ve read and heard from my doctor, it’s a crapshoot as to whether it has a positive effect, AND you’re stuck with the baby at the end (and my other condition isn’t pregnancy compatible, and can you tell I don’t like babies anyway?)

    How do people start talking about this stuff? Well, gosh, when I’m dead tired and dizzy from blood loss, people start asking what’s going on with you and are never happy to hear “internal bleeding” as a response. Because they want to pretend to be concerned, but don’t actually want to know what’s wrong. Because illness is yucky.
    And then you get the dumb-as-shit comments like, “Are you seeing a doctor for it?” Durrrrr. And when I explain that it’s chronic, I get the usual, “But isn’t there a cure? There has to be a cure!” (Despite what some crohn’s sufferers will say, having your entire large intestine removed is NOT A CURE.)

    “Stop being so stressed. You should do yoga or something. You need to relax.”

    Sooooo … do you want to pony up to take care of me for the rest of my life so I can lead a stress-free existence? Otherwise, shut up. Arrrrgh.

  106. Casey says:

    I don’t know where the other person (Arnold) got the ‘stop talking’ idea from, but for me, while the post does not actually SAY ‘stop talking to me at all’, I think that’s the general idea a lot of people will take away from reading it, because they’ll feel it’s ‘safer’ to not say anything than to risk sounding rude- and I don’t personally particularly like the idea of that outcome.

    I also feel the post makes a faulty assumption in stating that the disabled person in the equation is automatically going to be more informed and better educated about their condition. Certainly, a lot of people with disabilities ARE quite informed, but some people lack access to the resources to become informed (such as the internet), while others may actively choose not to continually research, as they feel it makes getting on with living more difficult. (I know I’ve personally had times where I just abandoned keeping up with developments regarding treating one of my conditions, because I didn’t have the time or energy to hunt things down, or the emotional energy to deal with treatment options not being available or what have you.)

    That said, I *do* think people need to respect your choice if you say you don’t want to talk about it, or otherwise change the subject. One suggestion, however tiring it may be to hear, is kind of understandable from someone who wants to be helpful. Repeatedly insisting on your suggestion even if the person clearly doesn’t want to talk about it, however, is just rude.

    I will add that I also *prefer* when people ask me about my visible condition, as opposed to them being ‘polite’, mainly because it’s been my experience that when people don’t ask, they end up with all kinds of crazy notions in their head about what it is and so on. So it’s ultimately less stressful for me to have someone ask and let me give them a quick answer than it is to deal with people whispering or acting on incorrect assumptions.

  107. XtinaS says:

    Casey:

    I swear to you, it’s really just about stupid questions or ignorant advice.  I get that they’re trying to help by suggesting I just don’t worry so much, but I mean, intent versus result, you know?  It’s not just that they’re not helping, it’s that they’re not seeing me well at all.  They don’t even try to learn whether I’ve tried certain basic things.  They just throw it out there because… I don’t know.  I assume it’s because they don’t want to be without an answer, or they in fact think I am a moron with all the IQ of an unladen ravioli square, or they want to fix it so it’s All Betters, or they don’t want to be reminded that shitty things happen to people, or they have a skewer in their head.  I make this assumption (and usually I assume direly, because I’m irritated at the time) because damned if I know how any sane and otherwise thinking human being can believe “Just stop worrying!” is anything like useful goddamn advice when I say “I have GAD”.

    (I have GAD, and I have depression that stems from that, so I can’t speak to the obvious phrases of others’ things, so.)

    It’s not that I would prefer we move to a framework wherein which one should never talk and always assume the disabled person is an expert, so much as I want us, as a society, to move to assuming a basic level of competence.  When I state that I have generalised anxiety disorder (actual diagnosis and everything), don’t bloody assume I just learned the term this morning and clearly you must educate me.

    Not to mention, there are whole ways of making suggestions without assuming the other person is a dunce.  “You may have heard of this, but have you tried meditation?”  “I was doing some research, and it seems that walking tends to help.”  These show that the advice-giver is at least trying.  (There is simply no excuse for the disability-specific equivalent of “Just stop worrying so much”.  I tend to immediately categorise said people as dunderheads, unless it’s real obvious they were joking.)

    I really want to write use case diagrams, to show the sorts of conversations I mean.  I am going to take this to mean I should perhaps go to bed.  *cough*

  108. @ madeline. first, i love your name! madeline is the name of my favorite character in childrens literature and if i ever have a daughter thats what i plan on naming her. second, yeah ive found more people online with dermatillomania than i expected, but the people i come across are almost exclusivly on boards and sites about dermatillomania. to encounter people experiencing the same disorder on a website not at all related to dermatillomania is, affirming i guess.

    its such a hidden not talked about thing. i think my worst experience re: it was when i had a stylist wash my hair while wearing rubber gloves due to the sore on my face, i explained that i had scratched myself there and it wasnt anything contagious or dangerous, but she wouldnt believe me. i was maybe 12 or 13 at the time and lacked the agency to just walk out of the salon so i sat there hating myself and wanting to dissapear.

    im pretty certain it must have a genetic aspect too, as looking back i realize my father suffered from it too, he always had tweezers and nail clippers and razor blades around, he was alwways picking and like me had no cuticules to his name. for me its my fingernails, safety pins, and tweezers.

    do you have symptoms of trichtillomania too? i dont have it as bad as some people, but before i was on my meds i had nearly no eyebrows at all, scabs on my chin from tweezing whiskers and if i had a really bad day i had a tendency to chop off all my hair or just shave my head. i still yank out hairs with my fingernails if i dont have tweezers and im feeling upset at all, and i have tweezers at both ends of my apartment, but ive managed to grow my hair to almost shoulder length and ive grown my eyebrows back, tho theyre terribly thin now from years of tweezing. im resisting the urge to buy an epilator, which is probably smart.

    this comment is absurdly long, i didnt mean to, but finding fellow feminists sharing my experience is so amazing.

  109. choppet says:

    An ex of mine once told a friend of his (without my permission) that I had ovarian cysts like she did. She extolled the virtues of “eating healthy” to get rid of them. He suggested it to me, with totally good intentions.

    Rage ensued. After six years of menstrual-related problems (I’m a month late as we speak, for no reason, and I’m not pregnant) — you can *not* tell me that “eating healthier” will potentially cure me. You cannot tell me anything. You do not know the intricacies of my condition, and you do not know my history.

    He still, I think, doesn’t understand why I was mad. And when I lectured him about privacy he asked me why, of all people, I was ashamed – as though my feminism should make me happy to disclose (or let him disclose) menstrual issues to perfect strangers. When I said that my medical history and condition were private, god damn it, he laughed as though I was being quaint.

    He was/is a great person but that incident still pisses me off. It’s a luxury of the non-sick. Like when he asked for my pain medication because he thought they’d give him a fun recreational high. No, damn it, some of us *depend* on these to have basic functionality.

    This post should be made into a greeting card.

  110. Mikeb302000 says:

    I don’t give unsolicited advice and I usually don’t like receiving it. Thanks for a great post and discussion.

  111. amandaw says:

    Both are irritating for a reason that hasn’t been brought up yet – if somebody suggests something I’ve already tried with little effect, it hurts to be reminded of a solution I invested a lot of hope in that turned into a dead end.

    There’s also the cumulative effect of being told about this dietary supplement and that exercise program and this holistic practitioner and that meditation class. It makes me feel like I’m supposed to constantly be chasing after the ghosts of wild geese, trying any half-baked scheme that some entrepreneur can come up with, to be able to “earn” the right to be sick. Because if I don’t try those things, then obviously I am not really trying to “get better,” so it’s my own damn fault that I remain sick, and I must “get something out of it.”

    It’s much like I said in the privilege-check post: people just desperately want to believe that there’s no way they would ever get sick like me, and if they did they want desperately to believe that there’s an easy fix that requires no more than half a second’s thought to come up with. If they have to admit from the start that maybe I have already put a lot of thought into all this, and here I remain still sick, they have to admit to themselves that there’s no reason but dumb fucking luck that they are healthy and abled, and they have no way to protect against falling sick themselves.

    That’s why I specified in (this post or that one?) that there can be harmful effects on us, as pwd, in thinking of our disabilities this way, the ever-transient newest-fad framework. I have had to train myself for years, and it has been a VERY PAINFUL effort (I cannot emphasize that enough) to NOT just get up and do everything I think I should be able to do, to NOT act on every impulse just because I feel ok now, to NOT take every stray bit of advice or commentary to heart and act upon it seriously. Because when I did live like that, I WAS FUCKING MISERABLE. And believe it or not, I’m not a model of strength even now: it takes effort to keep myself from falling into those old habits, and every. single. reminder. I get just chips away, bit by bit, at the protective wall I have built for myself against it.

    So no, your fly-by suggestions aren’t just harmless nothings. No, it’s not acceptable to keep offering those suggestions on the 1-in-50 chance that it might not have occurred to the person before. Because you ARE harming a good part of those other 49 when you behave with such thoughtlessness and casual disregard.

  112. amandaw says:

    I don’t know where the other person (Arnold) got the ’stop talking’ idea from, but for me, while the post does not actually SAY ’stop talking to me at all’, I think that’s the general idea a lot of people will take away from reading it, because they’ll feel it’s ’safer’ to not say anything than to risk sounding rude- and I don’t personally particularly like the idea of that outcome.

    But think about that a little longer. Why is it the responsibility falls on pwd not to alienate the abled by daring to stand up for themselves and their well being? If the abled hear “When you say this, it hurts me” and take away “Just never say anything to me at all!” whose fault is that?

    I also feel the post makes a faulty assumption in stating that the disabled person in the equation is automatically going to be more informed and better educated about their condition. Certainly, a lot of people with disabilities ARE quite informed, but some people lack access to the resources to become informed (such as the internet), while others may actively choose not to continually research, as they feel it makes getting on with living more difficult.

    … so if they don’t want to be up on the current research, it’s totally ok to throw your latest ideas at them?

    Yes, there are people who aren’t fully informed, by choice or just by default. That doesn’t make it acceptable to keep offering these offhand suggestions to anyone you encounter with any sort of condition. Again: it’s not like this means you can’t talk to them about their condition. You can ask them how they’re doing. You can ask them how they deal with it. You can ask them how it affects their life. Hell, you can talk to them about puppies and bunny rabbits! You can still make conversation with them, and maybe, you know, get to know them. It’s not like all your options are closed off here.

  113. amandaw says:

    Because, well, just. I don’t think a lot of people understand how much it limits those people with disabilities when we are constantly having to respond to these drive-bys. And when we complain that they are frustrating, we are reminded “well, they just meant to be nice” as though that takes away said frustration.

    This closes off options for PWD to really understand their own situation and to learn that of their fellow pwd. Because if you are always having to keep the frame that the abled impose on discussion about your disability, it’s pretty damn near impossible to really challenge the harmful power structure that exists in re disability.

  114. This is a fantastic post.

    Arnold has already been dispatched with vigor, thank god, but I have to say that his comments coming down squarely on the “intent” side of the intent-vs-impact divide are a classic tactic of the privileged.

    “But I didn’t mean to be sexist! You must be some kind of hysterical bitch!”

    “But I didn’t know it was racist! You’re just looking for something to be mad about!”

    Ad infinitum.

  115. Madeline says:

    jessilikewhoa- thank you! Yeah, the internet’s pretty great for people dealing with this sort of thing … and I’m so happy to find so many people here who consider anxiety and other psychological disorders to be “real” disabilities. I never thought of myself as having a disability before, but when I actually went to read the definition of disability and considered it in terms of my anxiety problems, it was obvious. The fact that I now know it’s a disability doesn’t change what it is, but it changes how I approach it in a positive way, I think. Of course, many people I now would say, “Anxiety isn’t a disability. EVERYONE has anxiety.” Sigh.

    I’ve never had trichotillomania, but I know someone who had it as a child and pulled out nearly all of her hair. If I had trichotillomania as severe as I have dermatillomania, I’d probably be bald right now.

    I’ve had such problems at the hair salon … I tend to find dry skin under my hair and pick at that, and I’m always afraid that someone will see the scabs and think I have some horrible, contagious disease. One time when I was about eleven, my mom told the stylist: “Be careful, she has lesions on her scalp.” I was mortified. Fortunately the stylist was very polite and didn’t ask anything more about it – or wear rubber gloves- although I wish I had had the courage to tell her, “It’s not contagious, I promise” … not that it would make it any less gross.

    One time I was able to stop picking for about half a year … but started doing it again as the result of a conscious decision, if you can believe it. For me, dermatillomania isn’t a disorder in itself … it’s a symptom of my other anxiety disorders. Picking really, really relieves stress for me. I wish I didn’t do it, but at this point I don’t know if I’ll ever stop or if I’d want to. The benefits outweigh the risks and potential social stigma, I guess.

  116. Another Madeline says:

    I’ve never posted here, but this post just resonates with me so well.

    I was diagnosed with OCD 5 years ago, when I was 13. The OCD had gotten to the point where I was terrified to leave my own home, was convinced that I was a terrible awful person, would be in states of severe anxiety for days at a time, and dreaded washing my hands because it took me so long to do it. Even with medication and therapy, I’m still not completely better. I still struggle with obsessions some. Luckily, I have two great therapists now and my meds are stablized and working well. In addition to the OCD, about a year and a half ago I developed anorexia. I’m still in the process of trying to recover from that; it’s definitely still a struggle.

    It makes me so angry when people make snap judgments about people with mental illness. I’m so tired of hearing about how I should try various alternative therapies, like maybe this herbal supplement, or monitoring my sleep cycle, or maybe becoming more religious. People don’t seem to understand that their comments are not helpful; I have a great team of doctors I’m working with; I don’t need advice from someone’s cousin’s friend about what might work. I’m tired of people who don’t know what I’ve been through devaluing my experience.

    Side rant (sorry I’m just very passionate about this subject): I’m tired of people using various mental illnesses in a joking manner. For example, people laughing and saying that they’re OCD because they’re neat; I know they’re just kidding around and trying to be funny, but it’s not! OCD is a serious illness and it literally took away a lot of my adolescence; it’s not something to be taken lightly or to be used as an adjective for people who are neat and tidy. Also, the comments about how different girls must be anorexic upset me because a) you can most definitely not tell just by looking at someone whether or not they’re anorexic and b) it’s really not other people’s business.

    I wouldn’t call myself a feminist – maybe I’ll decide that I am in a couple of years – but I definitely appreciate that feminism stands up for the people who are usually just ignored or mocked.

  117. Sarah says:

    jessilikewhoa: Thanks! Perfect example of when talking to someone with a disability in the right way can be helpful! Would you believe I didn’t actually know until just now (your post) that there was a name for that stuff? :p I just clumped it all under “OCD” or “me being weird” and didn’t bother to research it too much ’cause I was just relieved that I wasn’t depressed anymore, yanno? (PS. Just to clarify, having some random person be like, “omg, you pick at yourself, you must have [random diagnosis]” = *not* helpful. jessilikewhoa’s approach = helpful)

    I think I’ll look more into the “dermatillomania” thing…it’s ridiculously nice to have a name for it. ^^ And as for me personally, I literally have 1-2 nailclippers EVERYWHERE. (Bag, purse, backpack, jeans pocket, bedside table, bathroom, desk…) I had an airport security guy inspect my nailclippers (I think he was searching for, I dunno, a very teeny-tiny concealed knife?) when they weren’t allowed on planes, just so he could let them through with my carry-on, ’cause I could *not* go for a few hours without having to trim something.

    As for the hair, I used to trim split ends religiously (in class, with nailclippers, for hours on end) which was embarrassing. I managed to sell it to this one girl who asked me about it as vanity instead of insanity, and she was like “wow, doing your hair during this boring class is a really awesome idea!” and borrowed my clippers for a few minutes. :p Usually I’m worried people will see me messing around with my nails, and if they don’t think I’m crazy right away, they might think I don’t take the class seriously, or I’m really shallow and self-absorbed. The truth is, I listen much better when I’m fussing with my hands, ’cause then the urge to pick isn’t distracting me.

    Same deal goes for my skin. I’m so so so glad I rarely get acne, ’cause that can turn into a pick-apaloosa like none other. And blood on your face is definitely more noticeable than around your fingernails.

    This picking is my most visible disability actually, and so the one I get the most unsolicited input on. Sometimes I’ll be in a mood where it’s helpful, or I’ll tell someone to yell at me if I start trimming my nails for more than 1/2 an hour and try to snap me out of it, ’cause I have to study, but usually all the good intentions in the world (like my mom) aren’t helpful, because they don’t stop the urge or the behavior, they just make me repeat over and over out loud that yes, I’m crazy. ‘Cause telling people that is so much *fun* and doesn’t get internalized at *all*…

  118. XtinaS says:

    Madeline:

    … and I’m so happy to find so many people here who consider anxiety and other psychological disorders to be “real” disabilities.

    Honestly, this post is the first time I’ve ever referred to my anxiety as a disability, because it’s the first time I… I dunno, saw commonality between my anx and disabilities that are commonly referred to as such.

  119. Sarah says:

    Also, a lot of unsolicited advice sounds like “Well, have you tried *not* being gay?”

    And we know how well that works. :p

  120. amandaw says:

    XtinaS, God, that just makes me smile. I’ve had a hard time coming to terms with the words “disability” and “illness” and “sick,” but especially that first one. I kept chewing and chewing on it. I have a disability identity post written up somewhere, but needless to say it can be so freeing to let go of all that anxiety (lol) and give in. Disability, in the end, doesn’t refer to your physical or mental condition. It refers to how society chooses to separate you out based on such. And when you think of it that way, it’s damn hard to deny that anxiety can be a disability.

    Keep chewing. You’ll come to a peace about it, one way or another, in time. Whatever you end up deciding. Just hold that thought. It will be reconciled in time.

  121. Panopticon says:

    I’m tired of people using various mental illnesses in a joking manner. For example, people laughing and saying that they’re OCD because they’re neat; I know they’re just kidding around and trying to be funny, but it’s not! OCD is a serious illness and it literally took away a lot of my adolescence; it’s not something to be taken lightly or to be used as an adjective for people who are neat and tidy.

    My roommate said “I’m so OCD” earlier this week (she is not), and I said “actually OCD is a disorder – it’s something you get diagnosed with” and she said “OMG are you going to get all PC about this?”

    Usually she’s smarter about these things, but that really pissed me off. Because there is NOTHING like being 11 years old and being shunned by your classmates because you CANNOT STOP PULLING YOUR HAIR OUT.

  122. Faith says:

    Yep. My husband is living with HIV. I cannot tell you how many people over the years (16+ that I have known him) have had suggestions for what he should be doing (kombucha mushroom, macrobiotics, green tea, hyperbaric treatment, bitter melon, 02 treatment, I can go on and on). Let me tell you. I’ve worked in the field for 18+ years and he doesn’t want to hear it from me, believe me, he REALLY doesn’t want to hear it from anyone else.

  123. Bravo! A thousand times, Bravo!

    I’m someone who suffers from migraines and clinical depression. I can’t count the number of people who’ve tried to tell me that I don’t need my zoloft, or about their herbal tea that’s the perfect cure for my migraines, or whatever. It’s incredibly frustrating. I’m not a moron – I’ve done everything I can to understand my problems, and to understand how to treat them. The odds of some well-meaning clown’s suggestions being something worthwhile that I don’t already know about are a lot less than the 1 in 50 you suggest. More like 1 in 1,000 – if that.

  124. peggynature says:

    Ummmm….

    YES.

    Thank you for saying it much nicer than I could.

    In my view, advice should be reserved for:
    1) people you are very close to
    2) people who ask for it.

    Otherwise? Intrusive and unwelcome.

  125. Bekbek says:

    It’s funny, but this has given me a great approach to resolve an issue between my mom and I. She had fibro, and wow! the number of times I have seen people make crazy suggestions! I’ve been having a lot of snippy conversations with her, because I’m trying to open a very hard to zone business and she keeps popping off suggestions about what to try. I think she’ll understand my impatience with her helpful suggestions if I compare to the experience of people telling her about new age ritualistic magnetic bed cures for fibro!!

  126. MsFeasance says:

    It’s a luxury of the non-sick. Like when he asked for my pain medication because he thought they’d give him a fun recreational high. No, damn it, some of us *depend* on these to have basic functionality.

    You know, THIS should be a greeting card too, choppet. I feel like making a t-shirt that says, “Dear Debatably Well-intentioned Fuckhead, I can’t afford to throw an open-bar party for your personal recreation have a big wedding right now, or probably ever, because in addition to the costs of law school, I have to pay through the nose for the prescription medications that keep me from having seizures and debilitating pain. So STOP. ASKING.”
    Also, a general request to the world, similar to that in the OCD vein: Stop using epilepsy as a generalized simile for shaking/dancing. There’s a difference between shaking it up by choice, and living in constant fear that at any moment, a part of your brain you can’t control is going to kick you out of the driver’s seat of your own body.

  127. Jay says:

    I’m a doctor, and so about 20 times a day people come to me who in theory should welcome my advice, but even in that setting I’m careful about unsolicited advice. Everyone has hir own reason for coming to the visit, and I really need to know what that reason is before I start babbling about my own agenda. And I need to know what sie has done before, and what worked, and what sie thinks the cause of hir problem is.

    No one – random acquaintance, good friend, partner, doctor – should open hir mouth with advice until sie has done a whole lot of listening first. A WHOLE lot.

  128. XtinaS says:

    amandaw:

    I’ve avoided the term for forever for two main reasons:

    1) The usual “It’s just a mental disorder!” thing.  I mean, I can walk, I can talk, I can see, things like that.  Anxiety doesn’t fit, because that’s not preventing me… from… hm.

    Well, okay, it prevents me from forming close friendships, calling companies, getting better jobs (sometimes getting a job, at all), handling my finances well (or at all)… opening my mail, ever (I am not joking when I say I have about four years’ worth of unopened mail to deal with)… okay, fine.

    2) I worry* that if I say, if I take on the phrase, “I have a disability,” it will feel like a permanent and unchangeable thing in me.  I can no longer work on building frameworks for when my anxiety is eating my brain – I have a disability.  That means it’s always there, and trying to ameliorate its effects is just me denying that I have it.

    ??  I have no earthly clue where that train of pseudologic comes from.

    (* Har dee har har.)

  129. William says:

    and living in constant fear that at any moment, a part of your brain you can’t control is going to kick you out of the driver’s seat of your own body.

    You know, thats exactly why I’m a big fan of medication. Obviously, its a personal choice and all that, but in my life (and in the lives of many people I know) medication literally allows us to take control of our own destinies. Our entire society is geared towards frustrating nature and forcing the world to behave in a way that caters to our Will. I live in Chicago, a city who’s major business district was claimed from the world’s largest freshwater body, a city that literally changed the direction of a major river so we could get rid of our sewage and take advantage of an enormous source of clean water and recreation. This is the world in which we live. I have a lot of trouble swallowing the idea that somehow we should be expected to stop at our own bodies and just quietly accept whatever it is nature decides to inflict upon us, that having the audacity to say “no, I’d rather not be fucking debilitated if theres another option, thank you” is something we should be expected to feel guilty about.

    I think thats part of why unsolicited medical advice pisses me off so much. Better than half of the time it boils down to “buck up and put on a happy face” or “you know, theres this great traditional/herbal/eastern treatment that I heard works.” If that works for someone else, great, but on balance I’d generally rather use a substance that was developed in the age of reason than one that was pioneered when we were still sticking leeches on people and imagining the uterus was a migratory organ. I’d rather my medical choices weren’t being constantly second guessed through the lens of someone else’s projections and fantasy. Most importantly, I’d rather the choices I made not be judged.

  130. Esme says:

    When I was first diagnosed with depression (after 8 years of going untreated), I got the “have you tried diet and exercise” lecture from my goddamned nutrition professor, to whom I was explaining my 3 day absence from class to go to the hospital lest I be Baker Acted. And after 10 years of severe insomnia, I really just want to say, thank you for this, because your post is something I’ve never found the words for, and now I have a handy link.

  131. Sisterly says:

    But seriously, have you tried the koala diet? Nothing but eucalyptus and naps all day.

  132. One time I was able to stop picking for about half a year … but started doing it again as the result of a conscious decision, if you can believe it. For me, dermatillomania isn’t a disorder in itself … it’s a symptom of my other anxiety disorders. Picking really, really relieves stress for me. I wish I didn’t do it, but at this point I don’t know if I’ll ever stop or if I’d want to. The benefits outweigh the risks and potential social stigma, I guess.

    oh, i believe it! i hate when i dont have anything to pick, ill search all over my body to find that one little flaw i can pester. hell, im picking right now, it really is like breathing, i dont feel especially stressed or anything, but here i am picking.

    which makes me think of my friend from when i was little who sucked her thumb, so her parents started coating her thumb with that sour stuff they sell for thumsuckers and nail biters.

    dear people, if someone you kno does something you find weird, but poses no harm to themselves or others, allow them that activity, becos obviously its a comfort to them.

    afterall, if im in bad traffic i puff up my cheeks full of air, i dont kno why, it calms me, but nobody ever told me to stop that. just the picking since they think its gross.

  133. sisterly, i tried a variation of it, nothing but junk food and naps all day.

  134. Sarah says:

    I’d like the koala diet more, were it not for the koala-mom-poop you have to live on for the first year of the diet.

  135. Eevoid says:

    Hey Amanda,

    I’m sorry I don’t have the energy to read through all of the comments, but in response to the original post:

    I’ve learned a shit load from this post and others that you’ve written. Although I’ve been on the receiving end of it myself to some degree or another, I don’t know how many times I’ve been the asshole who tells people what they need to do (which often consists of advice on how to eat more like me or whatever).

    Thanks for sharing that. It was enlightening.

  136. annaham says:

    This is a great post, Amandaw. But you always make great posts, so coming from my mouth, the words have almost lost all meaning.

    I think, in part, the function of unsolicited advice is to make those who give it a.) feel better about themselves, and b.) keep perpetuating the illusion that illness or disability cannot possibly happen to them, because they are healthy, or have the right frame of mind, and oh, look, they even go out of their way to give “helpful” advice to ill or disabled folks because they care about them! Aww, Hallmark moment.

    Despite this, and even though some of them fool themselves with the “I’m just trying to be nice” crap, it can be awfully transparent. I don’t doubt that some of them *are* trying to help, but, to put it in lolcat lingo, they’re totally doin’ it wrong.

  137. Gement says:

    I’ve been nodding along at most of this. Unsolicited advice, ill-considered advice, advice that is really a patch on social discomfort, making someone’s illness the only topic of conversation, presuming the social intimacy of discussing medical problems (particularly emotional or genital ones)… These are all very bad things. I lived through my own share of my mother’s “Why don’t you just get up and DO something?” when I was fighting the worst of my depression.

    I do question this, though:
    “If the abled hear “When you say this, it hurts me” and take away “Just never say anything to me at all!” whose fault is that?”

    As someone who has received my fair share of stupid and insensitive suggestions on the basis of a medical condition, it is my personal experience that I have been given some good suggestions and leads by people who took time to listen to me, actually had some experience on the topic, and weren’t offensive in their presentation of information.

    And when I read the initial post, what I took away from it was “Never give advice, ever, ever, ever,” and I disagreed with what I perceived as absolutism there. It is not your responsibility to educate, but I got the impression that the intent of this post was to educate. I would rather the instructional message be very clear, and it wasn’t clear to me. A paragraph somewhere in the cool-down about conditions that might make advice welcome (including knowing the person well enough to know if they want advice) would have done it for me.

    This part, for me, is not about able-ism, but about clarity. (It is possible that, for you, no advice is ever welcome, in which case, it’s your post, you were being perfectly clear, and that’s your right. But it’s not my truth, and I hope people are not discouraged from giving me any advice ever.)

  138. Jackie says:

    I share your frustration. There are some people, who try to give you advice. Then when you either, tell them no thank you, or explain to them why it’s a load of bunkum. They just look at you like a 3 year old about to burst into tears, and cry out “I was only trying to help!!”

    I don’t understand, if it’s a part of infantilizing woman or something else. I’m really sick of this whole thinking, like “Well if someone upsets me, I’ll just look at them like a frightened child and they’ll have to stop telling me what I don’t want to hear.”

    Behaving like a terrible two is not attractive, female or otherwise. The response to, please move your children away a few seats before you sit down so I don’t have to hear them yell, should not be “*big sad eyes* How can you HATE children!” or making a face like a bratty child. I’ve had both these situations happen to me plenty of times. Then these parents wonder why their children are brats, when they insist on behaving like a bratty child themselves.

    When another woman looks at me with those big sad eyes, I really want to say, “I’m sorry, you’ll have to use words when you want to say something” or if it’s a mother, “Which one of you is the child?” You know that these type of people will be upset when they are talked down to like a child, yet while refusing to understand that when someone insists on behaving like a child, it seems the only way to communicate to them is on a child’s level.

    It tends to be that women are the people who tend to give other women unsolicited advice. If you don’t accept it, they’ll act like a high schooler just rejected by the popular clique. There is no win, when it comes to those situations. The best thing I think to do is pretend you didn’t hear them and walk away. If it’s a friend, explain to them that you aren’t cool with that, and as a friend they should just be ok to leave it alone. Not start in with, “I just wanted to hellllllppp!” or “I’m worried about your health!”

  139. Lauredhel says:

    Arnold, I think the language you’ve chosen offers a window into the problem, possibly in ways you didn’t explicitly intend. Just to pick out one comment:

    “This theme also runs counter to the usual disability activism that advocates open discussion of our disabilities

    Open discussion of our disabilities does not mean “random able-bodied people telling us what to do”. Discussion of our disabilities involves, y’know, PWD talking about their own disability experience.

    ” and allaying the guilt and the hesitance that the non-disabled feel about talking to the disabled.”

    Stop “talking to” disabled people, and start listening to them and talking with them. That’s all amandaw is asking.

    On how people know that PWID (People With Invisible Disabilities) have disabilities? There are plenty of ways the subject might come up in a situation where you’re not looking for cure-talk. How many times you you struck up a conversation with a new person where one of the first three questions asks is “What do you do?” I can’t tell you how uncomfortable that question is now to me, leaving me in the position of either lying, or disclosing at a time and to a person not of my choosing.

    Some cure-talkers latch on and talk incessantly about their pet topic. When I have energy for x minutes of conversation in a day, I don’t want 90% of that sucked out by these energy-creatures. Other cure-talkers take your gentle, polite smile and rebuff of their Magical Miracle Cure as proof positive that you have absolutely no desire to “conquer” your stigmatised illness, and decide on the spot that you’re a malingerer and a fraud.

    Some people latch on to every nuance of changing appearance or demeanour, and assume loudly and at length that it must be due to a change in the level of illness I’m experiencing, as though I’m constantly being rated on a scale of Extremely Sick to Not Very Sick, instead of me just being happy about something completely unreleated, or having had a haircut, or trying a new colour of shirt. For some people, a detailed inquiry into how my illness is this week and what exactly I’m doing about it takes preference over everything else, like what books I’m reading or how my kid is doing at school or the election results or what our holiday plans are or how proud I am of just graduating a university degree.

    We become one-dimensional in some people’s minds. Illness, personified.

    Yes, I have personal experiences with all of these issues. Recently. And yesterday when I was on a knife edge of barely managing to be very briefly upright, I was yelled at in a carpark by an eight year old over where I parked my car. Sometimes the barrage gets to be too much, and it’s massively unfair to place all of the burden for dealing with that on the person least able to handle it.

    Sometimes, unless you’re actively _invited_ in to a particular aspect of someone’s life, you just need to butt the fuck out. They’ll tell you if they want to invite you in. And when they do, listening is more important than talking.

    Please read Ricky’s Open Letter, she said it better than I do.

  140. amandaw says:

    lauredhel, have I ever told you that I love you?

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  143. romham says:

    lauredhel said: “Sometimes, unless you’re actively _invited_ in to a particular aspect of someone’s life, you just need to butt the fuck out. They’ll tell you if they want to invite you in. And when they do, listening is more important than talking.”

    um. thank you. for real. its pretty basic, but because folks are mired in this grose gooey paternalistic bullshit they often cant bring themselves to simply STFU until invited.

  144. Lauredhel says:

    “lauredhel, have I ever told you that I love you?>”

    Why, no, no you haven’t. You know it’s mutual, right?

    My comment’s a mess, reading back – switching of tense and person, mis-choices of word, etc – but it’s heartfelt. [g] I blame the brainfog.

  145. Vail says:

    Thank you for this post. I have IBS and PCOS and both of those are invisible chronic conditions. Everyone at my old job thought I was faking all the time. Jerks. Anyway, I’ve gotten tons of advice and I just wanna yell at them”yes I have the internet, and I can Google!! Imagine that!!”

  146. nenx says:

    I think it depends so much on the attitude of the speaker. When I was younger and getting kicked out of middle school, my parents got a lot of people looking down at them for not disciplining me enough, and yeah, a lot of those people needed to stfu.

    Years later, while getting my masters (and no, my parents never did discipline me more, but I did okay anyway), I lived with someone who was seriously, severely, horribly depressed, with poorly treated (despite. . . our best efforts) bipolar disorder that ended up manifesting as agoraphobia among other things. Most days were hopeless, and though I didn’t talk about it much (and she didn’t leave the house or talk to anyone else much), sometimes when I would mention it people would make suggestions. Lots of times they weren’t helpful, but I could tell that they were honestly trying to express their care and concern. I’ve also had several people close to me have cancer, and I know how hard it can be to know what to say to someone with a severe, debilitating, disfiguring, sometimes fatal disease. Sometimes just saying “have you tried accupunture? reiki? juicing? massage?” is the only way you can think of to express your desire to be able to do anything, because the truth is there is often nothing you can do.

    I’m not saying there aren’t times when people don’t deserve a smack (my brother’s chronic fatigue often brings these times up); just please don’t assume that we are all horrible people when sometimes we just want to try and connect, or support, or help, in whatever way we can.

  147. amandaw says:

    nenx,

    This was addressed in the original post as well as subsequent comments. To wit:

    And I know, I know you are trying to be nice. But having to confront people over and over again, especially people who are only trying to be nice!, with the facts about my condition and how it has affected my life, gets tiring after awhile, and makes me feel like a rotten jerk.

    Also see here and here.

  148. nenx says:

    Yeah, I know. And my point is that you’re welcome to ask other people to stop making suggestions to you, but please don’t ask them to in general, as I disagree with you completely.

  149. Jackie says:

    I don’t understand nenx, you say that Amandaw has the right to ask other people to stop making suggestions to her, but not the right to ask them in general. So does she have the right to ask or not? I don’t see how your saying she has the right to ask people to stop making suggestions, when in the next statement you say she doesn’t have a right to do so generally.

    Nenx, perhaps you haven’t lived as someone with a disability, or a difference. Alot of times when people try to help you, it seems as if they’re thinking “Oh the poor disabled person, they must need help, for they have the mind of a child!” This thinking from other people doesn’t end with public schooling, where it is all too common.

    Let me ask you nenx, would you like it if everyday you had people presuming you needed help? That everytime you go into public, people treat you as if you are a child. That the idea that all disabled people are:

    1. Like little children

    2. Are mentally deficient and simply cannot make decisions for themselves, or know what is best for themselves.

    Are very difficult myths for people to get over. Recently it has become popular to treat fat people in the same manner. Oh they just have to be stupid, how can someone not know to eat right and stay thin! It can’t simply be genetics, that bodies come in all shapes and sizes.

    It’s the same thing, from what I’ve gathered as someone with mild Asperger’s Syndrome. Being an adult means for a woman:

    1. To dress like you are on show everyday. Wear makeup, make sure you dress perfectly. To not do so, or to be comfortable, means you are behaving like a child. Someone who must be a deficient person in some way, cause you don’t wear skinny jeans, or fight your body size 24/7 which appearently is another part of being an adult woman.

    2. Being out in the world the minute you turn 18. Living at home with your parents must mean something is wrong with that person. This long time presumption still is believed by most. With movies like the 40-Year Old Virgin making jokes, about how someone who isn’t out being social 24/7 has to be a loser. In most countries it is not odd at all for children to live at home for a majority of their lifetime. It seems it’s rather unique to America to kick your child out the door off to collage at 18. And we wonder why other countries don’t have as much trouble that we do with our adult children.

    My point, is that it seems behaving “like an adult” has more risks than staying safe at home, or being yourself. I am happy. Perhaps it’s not the same kind of things that would make a NT happy, but it makes me happy and that’s okay. It just should be that simple, as I like to say, whatever floats your boat. All these assumptions of who must be like a child, or is a child, because they don’t force themselves as a square peg into a round hole is rediculous.

    Nenx you might enjoy knowing that people do care about you, by their offering advice. For those of us who have never been a part of the mainstream, advice to us tends to mean, being talked down to like a complete idiot. That might sound harsh, but that’s how it is to people like me, and perhaps amandaw. There is nothing wrong with wanting to life a life, free from other people’s assumptions of us and our abilities or lack therof.

  150. Meg Thornton says:

    I realise I’m probably preaching to the choir here, but there’s a reason a lot of people don’t talk about things like mental illness or similar in public. I don’t mention my depression to most people casually. If they ask, I’ll tell them, but most of the time it isn’t their business. I don’t mention it because I know how people behave to me about my weight.

    I have the temerity to be both visibly female and visibly overweight. This means I get a lot of unsolicited advice about how to lose weight and become healthier. “Why don’t you diet?” “Why don’t you exercise?” “Have you tried X diet?” “You should join up with a gym!” et flaming cetera ad nauseam. Now, I’m in my late thirties. I’ve been overweight since I was in my teens. Is it likely these people really think I’ve never tried anything like this, considering the culture we live in and the social expectations of women in such a culture? Probably not. But they’re trying to “help” me. What a pity that the “help” they offer consists mainly of “do whatever it was you’ve already tried, but this time Do It Right/Properly/Long Enough and It Will Work!”

    The first few times, this is nice, it’s sweet, it’s considerate and it’s very lovely. By the twentieth year of same, the implied assumption that I’m either too stupid, too lazy or just too uninterested in my health to have considered such a basic, straightforward answer to my obvious question (whether or not I’ve asked it) gets just a little wearing. So I don’t mention my depression to casual acquaintances, they don’t get their heads bitten off at the ankle for offering me dumb advice on how to deal with it, and everyone survives the conversation.

  151. Dan says:

    Instead of this “sie” and “hir” nonsense, which is jarring to the eye and can throw a person off, why don’t you just use “they”? That _is_ the accepted standard–yes, it IS standard English, look it up–for when gender-specific pronouns are not appropriate.

    Creating new pronouns to “solve” the legitimate problem of using he as an inclusive pronoun is just silly when we’ve already had a working solution for many years.

  152. Karen K says:

    Thank you. As someone living with chronic pain, I get so tired of people telling me, “Have you seen a doctor? Maybe you should try exercising more…” Etc etc etc.

    Because obviously, I just want to live with chronic pain that doesn’t allow me to sleep at night or get comfortable. It’s what I TOTALLY asked for when I was in a high speed car wreck.

    Sometimes, more than anything else out there, I don’t want to be told how to get better or what I can do to get better, I just want a freaking hug because I HURT.

    -Karen

  153. Katyakoshka says:

    To quote Zar: “Telling me I’m lazy and fat is really going to make me feel better. Dicks.”

    I’m in the middle of getting a hypothyroidism diagnosis that makes sense of why everyone telling me to “get out and exercise while eating better” hasn’t made a lick of difference in my weight gain and lack of energy over the past few years (or the corresponding depressive tendencies).

    And as a non-celiac wheat-sensitive with a celiac MiL… I get tons of well-meant advice that’s misdirected and difficult to fend off. I know she knows how to handle her stuff, which is great, but getting anyone other than my husband to recognize that my problems really aren’t the same… Meh.

  154. Well, there are idiots, who know very little about their disease.

    But, even with them, until they show their ignorance clearly, it’s polite not to help without a request.

  155. amandaw says:

    Fwiw, I use sie and hir because they feel right to me. I have never asked anyone else to change how they use gendered pronouns. I use him/her to refer to actual people with established gender preference, and where gender is ambiguous/irrelevant I use sie/hir because they work best in my writing. They/their gets awkward sometimes when *I* am writing in ways that sie/hir does not.

    You were able to gather my meaning, so I see no problem here. If you don’t want to use the terms, don’t. Otherwise, don’t lecture me on language.

  156. Lynda says:

    I swear I am not making any of this up (seeing it all together does make me realize why I just don’t bother telling anyone how I feel anymore, though).

    Best stupid advice ever: I went to a doctor for my migraines, and he told me to lay off the McDonald’s. (I hadn’t eaten out for six years, and rarely do to this day because I don’t eat meat. Telling people I don’t eat meat goes over well, too.)

    I had torrential nosebleeds as a kid, we would rate them in towels and most were five-towelers. I lost track of the people who would tell me to just lean my head back.

    Flashing lights are a trigger for those migraines I’ve had most of my life. I’ve been told if I just ignore the flashing, it won’t bother me.

    Half of the year I don’t sleep well, if at all. I do what I can to deal with it but I have friends who could sleep standing up while on fire, and they tell me sleep is very restorative and I should get some, even if it means I should go for more walks…at three in the morning.

    Unbelievably there’s more, like the allergies I just don’t take proper care of, and the tumor I could not possibly have had at 14 (but did), and the scarred corneas that “just need some good eye drops,” and my dry hands that could be completely cured if I just stopped washing them, but even I’m starting to wonder how the hell I’m still alive and haven’t killed anyone for trying to solve me.

    I’ve learned from it, though, and so I’ll offer to rub my grandmother’s back but as much as I want her with me forever, I keep my mouth shut when she hits the junk food with her daughters. (I also have a hiatal hernia but to this day my own mother is surprised when I say I can’t eat a mountain of food.)

    I think what I’m trying to say is thank you for this post. Also Sarah rocks for helping her friend with the migraine.

  157. Astrid says:

    Oh my god, /thank you so much/. This is it. This is exactly it.

    To balance out the other one who didn’t mind further upthread – I stutter, mildly to severely depending on phases. (“Mildly” means barely noticeable, “severely” means using pen and paper to communicate would be faster and easier for everyone involved.) It annoys me /so very much/ when people go “speak more slowly! Calm down! Take deep breaths!” or the like. Um, if that worked, I wouldn’t stutter. Honestly. I haven’t gone through almost two decades talking like this and never realised “oh, if I just slow down I’d stop stuttering!” It hasn’t been genuinely hurtful, because I’m secure in myself to mentally go “well, here’s another person who knows nothing about the subject” and not feel attacked. That, however, is liable to change.

    I did a speech therapy course. I’m not going to go into the details, but it basically offers near-complete fluency at the cost of your speech sounding noticeably abnormal, needing to always pay some attention to how you’re speaking and practicing every day for the rest of your life. (Currently an hour, drops to twenty minutes after a few years.) The abnormality especially makes me immensely unhappy, I’m still ringing with myself about it, the two week therapy course was probably the most miserable time of my /life/ for this reason and now? If someone goes “speak more slowly!” or “if you go to this therapy you’ll be healed!” (not knowing that the relapse rate after those therapies is usually nearly 100%) I am going to hear “you didn’t need to do that, you didn’t need to screw up your speech the way you did, the effort you put in/torment you put yourself through wasn’t necessary”. And that, though the people undoubtedly don’t intend it, is genuinely hurtful.

    (On a related note, usually when I say I stutter online I supplement it with “speech disorder stutter, that is.” I /still/ get comments from normal-speakers going “oh, I know what that’s like, I stutter a bit sometimes too! It’s not so bad!” Excuse me, I am using “speech disorder” for a reason. You stumble over words sometimes. Pre-therapy, I hadn’t been able to introduce myself without blocking on my own name for at least fifteen seconds for /years/. There’s a point where attempted empathy becomes insulting.)

    I also have very probable Asperger’s Syndrome/some autistic spectrum disorder, and some of the symptoms are kind of hard to hide. It always amazes me how people can be about some of them. I tell them I have problems with background noise and therefore really can’t go to the pub with them, they say “oh, I’m sure it’s not that bad! You just need to relax more! Come on! You’ll have fun!” and wind up convincing me and dragging me with them, and after ten minutes someone has to walk me home because I’m close to utter meltdown and not capable of getting anywhere by myself. And, you know, next time the group is going to the pub and I beg off they do /the same thing/, as if they weren’t front-and-center for my last breakdown. It’s as if they can’t accept that I might experience things differently from them, even with first-hand evidence to the contrary.

  158. Amelia says:

    So I’m in a Bible study at my old church (where we used to live), and we’re talking about our jobs, and I mention that my second job is working with a family whose two children have multiple disabilities of unknown origin. Their parents have had them in therapy since they were diagnosed as infants/toddlers, they’ve seen a bazillion specialists, and nobody knows why these kids are the way they are. After the study, a woman comes up with a slip of paper and tells me that she’s written down the name of her holisitic doctor, and these children should really see him.

    Smile, nod, thanks, bye.

    I trashed the paper. These kids’ parents didn’t need another suggestion, you know? They needed me there, helping the kids with their clothes and meals and Pull-Ups and pottying and baths and meds.

    I have bipolar disorder type II and IBS and hypoglycemia. And I’ll happily discuss why some meds sucked for me but work for others and vice versa; and whether I found dietary changes to help with my IBS; but when I get an e-mail from a fellow Yahoo Groups member about a specific diet that will cure my IBS, because it cured her daughter’s (completely unrelated) condition…or I get an e-mail from a raw foods groupie telling me that a raw foods diet will cure my bipolar disorder… (growls at computer screen)

  159. RobinWR says:

    AmandaW said:
    “It’s much like I said in the privilege-check post: people just desperately want to believe that there’s no way they would ever get sick like me, and if they did they want desperately to believe that there’s an easy fix that requires no more than half a second’s thought to come up with. If they have to admit from the start that maybe I have already put a lot of thought into all this, and here I remain still sick, they have to admit to themselves that there’s no reason but dumb fucking luck that they are healthy and abled, and they have no way to protect against falling sick themselves.”

    This!
    I’ve never commented here before but this resonated with me so much that I had to chime in. I could not agree with this more. I have Fibro, Generalized Anxiety Disorder, and Panic Attacks. And I also had a very rare viral infection that caused nerve damage to my legs. The doctors have no reason or explanation for why this happened to me – “It’s just one of those random, rare things that can happen.” is all the explanation I’ve ever gotten. I have had more tests than I can remember and have seen more specialists than anyone has ever heard of. There simply is no explanation – but the bottom line is that for six months I could barely walk and it’s only with months of physical therapy that I now get around okay with the help of a walker. You would not believe how I get GRILLED by people who refuse to believe there is no explanation for why this happened to me. And I try to be patient because I know at the heart of it is their fear that if it could happen to me randomly, it could happen to them. It is much easier for people to deal with things that they think they have control over – heart disease, cancer – those are things they can look down on people that have them and say “Well you should have eaten better.” or whatever. They can tell themselves it won’t happen to them because they eat right or exercise (although they are kidding themselves because you can do everything “right” and still get heart disease or cancer but it comforts them to think otherwise). But they have so much trouble accepting my condition because it means that they could also just wake up one random morning and find their legs aren’t working for no reason at all & it scares the shit out of them.

    Thanks for this post (and the comments) – it sometimes helps to know there are other people out there feeling what you are feeling and going through some of the same things you are.

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