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.

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)

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.

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.

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.

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