Disability and Class

This is a guest post by BipolarGirl for Blogging Against Disablism Day. Don’t forget to check out the rest of the Blogging Against Disablism Day posts here.

Trigger Warning

I am bipolar. There’s debate as to whether I’m bipolar II or I. There’s debate as to whether I have anxiety attacks or hypomanic episodes. I take two medications every day and will for the rest of my life. One, lithium, balances my moods and keeps me from becoming uncontrollably and terrifyingly manic. The other, effexor, does what it can to keep me from slipping into a dark and enveloping depression. Both have side effects I could really do without – the constant thirst, the layer of fat over my belly, the moments that feel like an electric shock in my brain if I miss even one dose of effexor.

There are a lot of things I could say about being bipolar. How even though I have amazing health insurance, I still can’t get assigned to a therapist for longer than 10 weeks at a time. How I feel about the wide gulf between the reality of mental illness and the public perception of mental illness. How sometimes I still have so much trouble with depression that I want to crawl into bed for the rest of my life. How I used to cut myself and haven’t for over 10 years but still automatically think about it whenever I get emotionally overwhelmed, the way I imagine a drug addict would think of using.

But instead I want to talk about intersectionality. While I feel I would share a lot of experiences with other people with bipolar, I also feel I have a unique experience in the disability community because of my socioeconomic privilege. I want to highlight the impact my class had on my disability experience because I feel it was one of the most important factors in my recovery, and I think the fact that class can be such an important factor is ridiculous and needs to be addressed.

I began having problems my freshman year of college, at a small private university a thousand miles from my home and parents. The depression came first. I felt like I was wrapped in a thick layer of cotton wool, insulated from the world, everything so muffled I could barely feel it. Some mornings I was so overwhelmed by the idea of trying to figure out what clothes to put on that I would stay in bed all day to avoid the daunting task. When I felt the waters start slipping over my head, I discovered self-harm. It gave me a pure line of adrenaline, a sensation that was unarguably mine, unarguably real.

I was scared of what I was doing, so I went to student health. They diagnosed me with depression and started me on anti-depressants. Unfortunately, these also triggered mania. Most of it was low-level hypomania where I would pace up and down the dorm hallway for hours and hours and hours, shaking my hands to try to work out the extra energy. But the swings started getting worse, and moving faster, so sometimes I would trudge into a class in a depression only to have to leave halfway through, filled with uncontrollable energy.

This all culminated one awful afternoon. My self-harm had seriously escalated, to the point where my friends were trying to keep me away from razors or knives, and it was all I could think about, all I wanted to do. I came up with a scheme to get some kind of blade and asked someone in the dorm I didn’t know very well to borrow a Swiss Army knife on the pretext of needing the corkscrew to open a bottle of wine. I can’t remember what happened after I used the pocketknife to make four or five cuts into my leg but here’s what I’m told: I went to my friends’ dorm room on the third floor and went to the window. I demanded that they let me jump because I knew I could fly and I wanted to try it out. I was genuinely convinced that I could fly and genuinely confused as to why my friends would not let me. They called 911 and an ambulance took me to the hospital, where I was admitted to the psychiatric ward. I do remember waking up there, and my mom being there.

For pretty obvious reasons, the small private university had some serious concerns about me returning to the dorms. My friends, who had to prevent a psychotic me from swan diving out a window, were understandably freaked out and the university certainly didn’t want that happening to any other students. So they told me that when I got out of the hospital, I was not allowed to return to the dorms to live. They also suggested that perhaps it would be better if I took some time off. And went away. And preferably did not come back to school there. Ever.

If I had dropped out of school then it would have been a disaster. I could have returned home, but all of my friends had left town to go to college elsewhere and I would have been mostly alone, disconnected from my social supports. Also, for better or for worse, a lot of my confidence and self-esteem was wrapped up in my academic achievements (I got a 4.0 the semester I was hospitalized twice) and a break in academics would have set back my recovery significantly. I was panicking. My therapist was very concerned. So my parents hired a lawyer and sued the university and worked out an agreement for me to move to a new dorm and sign a behavioral contract to stop self harming and some other stuff, but basically I got to go back to school.

I ended up being hospitalized again a month later and then spent a whole lot of time in a psych outpatient treatment program through the hospital, and then a whole lot of time in private therapy and with a psychiatrist who specialized in bipolar patients. I found a combination and dosage of medications that worked for me. I learned more productive coping skills and ways to avoid self-harm. I worked on negative patterns of thinking and cognitive behavioral techniques.  My privilege made that possible as well – a whole lot of this wasn’t covered by any kind of insurance and my parents paid out of pocket. I know they still are arguing with the hospital over billing for my inpatient and outpatient treatment.

There have certainly been ups and downs and will continue to be, but overall, I’m ok. I graduated with honors, went on to law school, and now am a successful lawyer. I honestly and wholeheartedly believe that without my parents and their money, their willingness to argue with the authorities of a university, their comfort with the legal system and ability to use it successfully – I would be dead. All in all, I had seven suicide attempts, not even counting the extremely dangerous behavior I exhibited while manic. But instead of trying again until I got it right, I had the opportunity to get my treatment right.

I believe that being born into a family with socioeconomic privilege made the difference between my success and my death. And I think that’s ridiculous. Everyone deserves the same opportunity for recovery and treatment that I got. Everyone should have the chance to get every possible support to thrive. And I mourn for everyone who hasn’t had the same access to treatment, the same ability to fight for what’s best for them and their recovery.


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66 comments for “Disability and Class

  1. human
    May 1, 2009 at 12:36 pm

    Thank you for sharing this Cara. My best friend is bipolar and sometimes it is hard for me to understand her. Hearing from other people about their experiences is one of the things that helps.

    As for me, I once was diagnosed with depression. I was in therapy and on meds but I got worse instead of better. My life fell apart and I left my independence to go and move in with my father. He was not supportive of me continuing treatment.

    I’ve never been sure how I managed it, but I decided I was sick of not being in control of my life and I started fighting. Moved out, travelled around working for shit pay, found some friends to live with… I still have mood problems sometimes but using a combination of advice I got from those therapists way back when and my own experimentation, I have figured out ways to deal with them at a behavioral level. I don’t ever intend to subject myself to the “system” that depressed people have to deal with to get treatment. It was bad for me. So I think of myself as someone who had depression in the past but no longer does, even though strictly speaking that’s probably not true.

    But it works for me, so hey.

    Thanks again for talking about this.

  2. BipolarGirl
    May 1, 2009 at 12:41 pm

    Just FYI, while Cara was the one to post them here, these are my experiences. Just want to be clear that this is not her history or her diagnosis or anything, it’s mine.

    I’m glad that sharing the experiences was helpful to you. I have had relatively few true manic phases for someone who is bipolar – the psychotic episode described in the post above was the truest manic experience I’ve had. The daily effect of the mania, though, is to make me distrustful of any euphoria, any excitement, or any excess of energy – I’m always terrified those aren’t real or healthy emotions but instead the first indications of a brewing manic episode.

  3. May 1, 2009 at 12:42 pm

    Hey Human, just to make sure it’s clear, because I couldn’t tell from your comment whether it was, this is a guest post! I did just write about my own mental health issues today at my other blog, but I’m not bipolar.

    This is a guest post by a reader going under the name of BipolarGirl. I’m going to change that line at the top to bold :)

  4. human
    May 1, 2009 at 12:53 pm

    I am so sorry, BipolarGirl! I should have read more carefully. Thank you both for the clarification.

    One other thing in relation to class and bipolar — my friend’s medications have been a serious financial burden for her and her husband. Fortunately, they have been able to manage so far where a less well off family could not. I have been stunned by how unwilling her doctors have been to consider the financial burden in addition to other considerations when prescribing medication. Especially since constant worrying about her medical condition causing her family to go bankrupt doesn’t do my friend’s mental health any good at all. You would think that would be obvious, but I guess not!

  5. debbie
    May 1, 2009 at 1:07 pm

    Hi,

    I have had some similar experiences. I have a very severe anxiety disorder, as well as depression, and have at times been totally non-functional. I have avoided having to go on ODSP (disability) only because I have parents who were able and willing to support me when I couldn’t work or go to school. I am finally approaching a point where I can mostly function, but I think this is purely a function of class privilege. I have a wonderful therapist that I have been seeing for two years that my parents pay for because as a grad student, there is no way I could afford her, even with a sliding scale. My race and class privilege, and particularly my education and access to academic libraries and journals, have allowed me to self-advocate in a way that others cannot.
    Of course, the reality of the mental health system and many mental health professionals mean that I get labeled a non-compliant patient for doing things like insisting that they believe me when i tell them about the hell I experienced going off of effexor, demanding accurate and detailed information about drugs they want me to try, setting boundaries about things I will and will not discuss with my psychopharmocologist, and calling him out when he said something really sexist during a session.

    I have so much more to say about this, but I’ll end by saying that it’s infuriating that I know that I get reasonable treatment because I am not intimidated by doctors, and I am protected by all kinds of privilege from many of the abuses of the mental health care system. Most people are not so lucky.

  6. May 1, 2009 at 1:21 pm

    Thanks for sharing this experience, BipolarGirl. I was diagnosed with bipolar disorder in 2004 (at age sixteen) and I still haven’t quite adjusted to the disorder or found myself able to be truly open about it. You are extremely lucky to have parental support, both financially and otherwise. My family wasn’t at all supportive of my decision to seek professional help or to take medication, which ended up causing a lot of problems for me including a suicide attempt by overdose that almost claimed my life (the two-year anniversary of which is tomorrow, as a matter of fact). I was sexually assaulted by my dad (also bipolar), but never told anyone and didn’t really allow myself to feel anything concerning the SA until he died in 2002.

    I first began feeling depression at age twelve but no one took it seriously and told me I had no reason to be depressed so young, and as things got worse, the line of thinking from my family was that I needed to seek a deeper relationship with god, particularly since I’d started listening to rock music. As a Black girl, this was unheard of and it scared everyone, I guess. Even though I didn’t buy this, being as young as I was I couldn’t keep from feeling shame at being told I was doubting god by trying to get help and find the correct name for whatever was wrong. To be honest, even my psychiatrist at the time would make me feel shameful for this — I often got doses upped for saying I didn’t believe in god, for example. I tried to make myself adopt their opinions and views on my issues, and of course when I tried to kill myself it blew up in everyone’s face…including mine. I haven’t been able to get over the shame of being stigmatized to really get myself good help, though I recently made the decision to seek out help for this come hell or high water. You’d like to think you can control it on your own, but it’s truly impossible.

    Bipolar disorder has an impact no matter the financial or emotional support a person has, but even moreso when the affected individual has either no support or a shitty support system. Like you, I don’t have that many manic periods and I’ve only had one experience with true psychosis..but I often wonder if it counts considering that I was dehydrated and hadn’t slept for three days. But regardless, I thank you for this post, it was an inspiration.

  7. Ellen
    May 1, 2009 at 1:28 pm

    Class has a huge amount to do with it. Health care is a privilege in this country, but mental health care even more so. And it is unfortunate because most people could use some form of mental health care. There is no such thing as preventative mental health care, and there should be. When you think about the amount of people in jail or homeless with mental health problems it becomes apparent.

    I was on effexor for over ten years, and I still had quite a bit of depression but I couldn’t go to therapy because my insurance wouldn’t pay for it. When I finally quit my job to go back to school, I was able to get therapy, and was lucky enough to get a gra-ship on a project using CBT and meditation. I got off effexor. Before I did, my doctor and I talked about the possibility of going back on antidepressants. I had three conditions. it had to be generic, it could not cause weight gain, and it had to have a long half-life (I was not going to deal with withdrawals anymore). It turned out meditation and CBT were not enough. I did have to go back on antidepressants, but I am on wellbutrin instead, and less depressed than I have ever been in my life, and 40 pounds lighter. I also feel like I wasted ten years because I could not afford the standard of care.

  8. May 1, 2009 at 1:33 pm

    Reading this reinforces to to me how lucky I am I live where I do, which is Pennsylvania.

    I’m Bipolar as well- Type 1. I’m also very much *not* privileged. For years I dealt with severe depressions & it wasn’t until the docs finally convinced me to try taking anti-depressants that the manic side of things started showing through, although it took a while for the docs to figure out that’s what was going on (I kept saying, “I seem to have issues with time management…”). When they did, I was in my first semester of grad school (Studio Art) & had absolutely no insurance. Fortunately for me, PA actually has a state support system to deal with mental illness & the facility here in my town is very good. Admittedly, it took a fair amount of time to figure out the right drug combo for me because I couldn’t see my p-doc as often as someone with good insurance could have but I didn’t have the option of paying out of pocket. I did have the advantage of doctors who were well-versed with Patient Assistance programs & more than willing to do the paperwork for them. Without the state program & patient assistance, I’d be locked away somewhere- or possibly dead. (It also helped that I was in an art program- it’s not unusual for art students to have mental health issues so my profs were generally very understanding) Unfortunately, it seems there are a lot of doctors out there who either don’t know about patient assistance or can’t be bothered with it. Access to those programs alone would help bridge the distance between the privileged & the underprivileged.

    Right now, I’m facing the issue of wanting to start a studio business selling my work but I’m not sure if self-employment is a viable option for me. With this illness, I need to have health insurance & it’s incredibly expensive for a self-employed person. On the other hand, it would be over $800 a month out-of-pocket just for my meds. On the other other had, having a job just for the insurance means I’m not getting any time to spend on my work & it’s kinda eating my brain to be under-employed. Yikes.

  9. BipolarGirl
    May 1, 2009 at 1:37 pm

    @Jaleesa – you make a great point about the value of emotional support from parents, separate from or in addition to financial support. My parents, while pretty far from thrilled about my multiple suicide attempts or getting a call from an ER in the middle of the night saying that I was psychotic, have been amazingly supportive and helpful throughout the entire process. That is definitely an important factor.

    @Ellen – I definitely agree that there’s a huge need for access to mental health care, and that it can be more difficult to access mental health care than physical health care in some circumstances.

    It’s amazing that we all hate Effexor so much! I’d love to try to swap it out, but am a) scared of the withdrawal and b) scared of tapering off and tapering on and unwilling to take the 3 months out of my life to deal with that transition.

  10. RD
    May 1, 2009 at 1:41 pm

    Got kicked out of the house for having mental health problems.

  11. shah8
    May 1, 2009 at 2:05 pm

    For me, the benefit of class and wellbeing is represented by friends of the genuine sort.

    It’s harder to keep friends when you’re not of the right sort. And friends are the ones that really get you through day by day.

  12. May 1, 2009 at 2:23 pm

    When I was first trying to figure out what was “wrong” with me mentally, I had a hell of a time finding help. I had just quit college the second time. I was back in my hometown. I was uninsurable, and still in the 24-month waiting period after being awarded disability before I was eligible for Medicare. I couldn’t work, had no income but that disability.

    And no one would take me. I couldn’t afford $200 for one hour and I didn’t even know where that would lead. I was twenty years old, so the only clinic I found that might work with me financially wouldn’t take me because they only saw “adults” 21+.

    I ended up bouncing several places. The psychologist in the sliding scale clinic listened to my description of the debilitating panic attacks and the ongoing anxiety that kept me from facing the grocery store, and all the fuckeduppedness I faced w/ my home/family situation, and gave me five minutes of “Think Positive, Yay!” before showing me the door. I went back down to the physician’s assistant who referred me up there and cried and cried. He brought the psychologist back down, and the psyc sat there uncomfortably while I sobbed and then told me they only really saw people once; they didn’t do ongoing care. I asked him to refer me to someone who did. Two places he gave me. The first didn’t exist.

    The second did, and I got some minimally-helpful counseling for $50/session, which was more than I could afford, but I drained my very small savings for it.

    Then I became eligible for the county MH help (don’t remember what it was that changed but something did; I hadn’t been elig before). I went in and went through the same routine I’d gone through with everyone else who had turned me away. The lady typed at her computer, and when she got up to get a printout I saw that on my papers, she had marked me for “Substance Abuse” because I took painkillers for my fibromyalgia. And thought back and realized that was all the had really asked me about, was the Vicodin.

    Sigh.

    I’m taken care of now (even though I no longer receive disability and therefore Medicare). My husband works for the state, so he has good insurance. And we can afford the occasional mild out of pocket expenses when we have to. But I got to go through some CBT. I got away from my family (the worst trigger). My insurance paid for my medication. I’m comfortable now. Three years ago, not so much. Amazing what it does for you, getting married to an able-bodied man. If I didn’t have my husband, there is no doubt I’d be triply fucked all over again. And there’s no reason anyone should ever have to realize that.

  13. BipolarGirl
    May 1, 2009 at 2:31 pm

    If I didn’t have my husband, there is no doubt I’d be triply fucked all over again. And there’s no reason anyone should ever have to realize that.

    That’s exactly what I mean, Amandaw – the luck of having a family that is able and willing to finance treatment, the luck of finding an able bodied husband with good health coverage – it is absolutely ridiculous that LUCK plays such an important role in whether people are left as “totally fucked up” or get to become comfortable. This is always what I think of when I see someone with obvious mental illness living on the streets – where could they have been if they’d had the luck that I had? Would I be in their shoes if I didn’t have the luck to be in a supportive and well-off family?

    This reality does not fit in to the common assumption of meritocracy in this country, that if you work hard enough and put in a real serious effort, you can get ahead. For people with mental health issues in need of significant treatment, that is demonstrably not the case. If you get lucky enough to get the treatment that should be available to everyone, you can get ahead. If not, you’re left to founder.

    It seems like such a fucking waste that all those people who could benefit from treatment can’t get it, and for absolutely no good reason at all. Imagine what they would contribute if they could get treatment. Imagine the years that all of us have wasted trying to access affordable and appropriate treatment.

    (Note: I’m certainly not implying that people with mental illness can’t make contributions and be valuable people without treatment, just that without treatment I would have been dead and thus unable to make any contributions at all.)

  14. May 1, 2009 at 2:34 pm

    Yep, the college threatened to kick me out of the dorms for self-harm, too. After they’d triggered a suicide attempt by assigning me and my abusive asshole ex to the same dorm for the second year in a row, AGAINST MY THERAPIST’S EXPLICIT ADVICE.

    Bitter? What? Me? Never!

    I am lucky, though. I realize that. I mean, being born with your self-protective instincts set to PRIMAL SCREAM isn’t so great, but when my anxiety disorder threatened to take over my life, my insurance covered it. My insurance covers my monthly visits to a shrink and reduces the cost of my two prescriptions to a whopping 20 bucks a month. If that hadn’t been the case, I probably would have lost my job because I was so anxious that I could no longer sleep, and because I could no longer sleep, I could no longer function.

    If I hadn’t had access to decent, affordable healthcare, I’d be dead, or living in my parent’s rec-room right now. And if I didn’t have parents with a spare rec-room, I’d be dead or on welfare right now. And that’s the ugly truth: socioeconomic class determines who gets treatment, and getting treatment determines your earning power. Which–shocker!–determines your socioeconomic class. It’s a vicious cycle, and a stupid one. Everyone deserves the right to be as healthy and happy and modern medical science can allow. Income shouldn’t matter.

  15. May 1, 2009 at 3:00 pm

    I’m bipolar as well (among other things), and my experiences with trying to access any sort of support network has definitely been impacted as class. As it’s harder and harder for me to hold down work, and impossible to get work with good benefits, my experiences are a lot different now as someone with no insurance and no money then when I was in school, and could afford therapy. I’m really lucky that I have a rad support network of friends, because my options seem to be leaning on them, what alternative methods of care they can provide, and avoiding the system, or getting into enough of a crisis to get hospitalized.

    Class is a really huge issue, because having resources to cover more and a greater variety of treatment options definitely lets you have a lot more control over how the system handles you. It’s always good to have options other than having drugs thrown at you and then be left to fend for yourself or just trying to stay out of trouble and under the radar (especially where drugs are controversial, and even for people they work for take a ton of tinkering that sliding scale clinics don’t have the time for).

    Bipolar Girl @9: Effexor should have tipped off my psychiatrist when I was in school that I was bipolar, and not dealing with depression and anxiety. Withdrawal was brutal, the only withdrawal I had a worse time with was Cymbalta…the NSRIs have evil, evil withdrawal…anticonvulsants are nothing compared to them in terms of stopping. I’ve never gotten off one anti-depressant while getting on another, but I’ve heard that isn’t as bad.

  16. Jadey
    May 1, 2009 at 3:10 pm

    In my second year I started to get really down emotionally (was not long-lasting or severe enough to be diagnosable as depression), and around the time I started to cry inexplicably and uncontrollably, I told my mother and within three days I had an appointment booked to see a counsellor (not a therapist), courtesy of her extensive healthcare coverage. The waiting list for counsellors at my university was around a solid year at that same point in time (this was considered a major problem, which is why I knew about it).

    Among my close friends, I’m one of the most economically privileged, and certainly one of the very few with that kind of access to mental health services, even though some of them have struggled with much greater personal difficulties. We’re in Canada, so some of our access to services is more egalitarian, but not so much for mental health services, because those still aren’t considered important enough.

    Just… Three days. And probably only that long because it was over a weekend. For a situation nowhere near life-threatening. And so many fellow students still waiting. I found that incredibly disturbing.

    Especially coupled with the unbelievable issues around mental health and the criminal justice system. When prison is your best access to medical care, physical and mental, then something is seriously fucked up in the world.

  17. RD
    May 1, 2009 at 3:11 pm

    Parent’s house that is, got kicked out for mental health problems.

  18. Alyssa
    May 1, 2009 at 3:26 pm

    Thanks for your post, Bipolar Girl. I’ve thought about this issue a lot while working through my depression and anxiety (I’m on Effexor now and it works wonders for me). My experience differed a lot from that of friends with similar problems, simply because I happened to have insurance and an understanding family.

    My parents are both licensed psychologists, and yet it still took them a long time to catch on to the severity of my problem and do something to fix it. As a young teenager, I had no idea what was happening to me or who to talk to about it, and was often told that I was “just being dramatic” and it was normal to “be sad once in a while.” When I finally did get help, it was my parents who got me back into school, kept me from having to take time off (the idea of which, similar to your experience, terrified me) and convinced me to go to a therapist and to keep the rest of my life as normal as possible after a major depressive episode in college.

    Not only that, but having health insurance was the only way I could have gotten the antidepressant medication and the psychotherapy I needed to recover stability. Friends with depression who have not had insurance, or had to go on Medicaid, have had endless troubles getting medication and even something as basic as emergency help. And it goes without saying that for someone with mental health issues, having to jump through hoops to get basic treatment exacerbates the problem exponentially. Even with insurance, I’ve had panic attacks upon getting doctor bills in the mail. It’s no way to treat someone simply because they’re in a lower economic class.

  19. May 1, 2009 at 3:32 pm

    I definitely appreciate, too, that the tone being struck is not: “Some people have it worse for you, so FEEL GUILTY.” Instead, “Everybody would be better off if we cared enough to take care of their basic human needs.”

    Because you deserve the treatment you get. You deserved for that college to get its ass handed to them (and they got away easy) and to be able to go back to doing what you wanted to do there. You deserved to excel as much as you could, you deserve a treatment regimen that helps you navigate life’s paths with greater ease. *You deserve that.* Period.

    The fact that some people don’t get that, or don’t get some of it, or face other troubles, or whatever, doesn’t mean you should feel like something is wrong with you for having had the luck that you had. It means you should realize it is luck, yes. But our current societal mindset toward MH just can’t handle that, being able to acknowledge that luck without also shouldering some moral blame for having access to treatment, recognition, etc. That mindset just *needs* to have someone to *blame.* And for some reason, the “someone” always ends up being one of the marginalized people, whether they’re too lucky or not lucky enough for everyone else to give a damn about them. Hmmm. Wonder why that is.

  20. Jesse
    May 1, 2009 at 4:00 pm

    I’ve crashed and burned twice over in the same damn program back in college, and the counsellor I was able to see there thanks to her working for my school and all was the most recent in a list of counsellors to suggest I go get tested for ADHD. I’ve been through so many jobs I’ve lost count, getting much better but I still need a flexible workplace that lets me work in my own way instead of trying to force me into their little box of what an employee should do.
    For years I struggled with depression, it is still something I am very aware of. I’m an ex-self-harmer too, started at 14 and still healing — last time I was really into it was some six years ago, but just over a year ago I had a single momentary relapse. It is still what my brain jumps to when I go on a downswing, I can really relate to you there. One blog I read does “Heroes Blogging” and I had to avoid their site for a while until a certain image made it off the front page, not sure if it’s from the show since I don’t watch it but it had words cut into an arm and was intensely triggering for me despite my rather good/relaxed mood and lately happy life.
    I’ve been seriously considering going in for an assessment now, especially if I want to go back to post-secondary at some point in my life. I always seem to get amazing grades which is why my messing up makes no real sense, starting to read about ADHD in girls, in adults, and so forth has been like reading sections of my life, although I’m still very leery of self-diagnosing. Here’s where some problems come in.
    I’m something of a lower-middle-class, so to speak, been here most my life. Definitely not “poor” but there’s been trips to the food bank at many points in my life, I think my father/stepmother crossed into “poor” during my teens, and these days I am actually able to save some money each cheque despite living on my own. Counselling in my life has been mostly from people at my school (elementary, high school, college, whatever,) free counselling provided here in my city (limited number of visits during a certain time period,) and sometimes a professional with a private practice but we could never afford more than a few visits really. I realize I’m very fortunate to have received any of this at all. But now I work at a place with no medical coverage and what I can pay for from my province won’t cover much in the way of mental health for sure. I got booted from college before I got my assessment, so now I have to pay for one on my own, might not do that until I am sure I’m going back to college or something — which I won’t be doing until I pay off two old student loans. Blech.

    I seem to be fortunate in that professionals have been pointing out my (at the very least) ADHD-like traits despite the fact that I’m female, but even now when I try to discuss the possibility of me having this problem my parents can be very dismissive, I know they’re doing it out of love but I also know it is from ignorance. I am not interested in medicating myself if I do get a diagnosis, unless I think it’ll really help my potential future schooling, the least reason of which is because medication is expensive. Back when I was booted from college the second time I was on antidepressants, but had to stop those soon after leaving because the cost was too much (the school was no longer covering me under a student health plan you see.)

    I can get much easier, faster, cheaper, whatever care for mental health stuff if I am in the middle of a “crisis.” Which is good, I mean, you need it then right? I’ve used the crisis line here in my city. But my life is pretty good right now, I’m just scared of it all going to hell again. It’s done it before. How can I stop it from happening? I don’t want to just wait until things are too fucked up to get help, like my last stint at college, I want to prevent that from happening again. I do what I can, I have seen some success, but what if it isn’t enough? And what if I don’t have ADHD, like my parents and teachers kept saying, and I’m just lazy, innattentive, impulsive, and forever doomed to be socially akward?

    Sorry, rhetorical questions. I’m doing what I can.

    On a non-mentally-disabled note, my sister is so physically disabled as to live off of money from the government. Er, “live off.” Because they sure don’t give her enough. I’m glad she has a partner who is able to pick up that slack, but what if she didn’t? It’d be up to someone like me really, close family. I’ve helped her so much in the past. Can’t tell the government I help though, or she’ll get less money and she already gets enough to cover just rent in the cheapest/least-safe part of town, thankfully “just rent” at this place also means electric/heat and water are included. She gets more trips to the food bank than any regular person, but still not enough to keep her fed all the time (a huge issue thanks to her high-charged metabolism.) Let’s not forget the part of her meds that she is supposed to cover the cost for, her pain meds that is. Or transportation. Or phone. Or furniture, clothing, whatever. It makes me so angry.

  21. May 1, 2009 at 4:01 pm

    SmithingChick, I grew up in California (where I had the experiences I commented about) and moved to Pennsylvania a couple years ago. My husband is a caseworker for the state and I recently got a part-year position at the same agency (in clerical). Based on what he has described to me over his time there, and what I saw when I was there, Pennsylvania is exceptional in the United States as far as taking care of those disadvantaged by class or health. Caveat, of course, that it’s still, ahem, woefully inadequate — but PA truly does have a system that rivals almost anybody else.

    Medical Access for Workers with Disabilities is one great program I was on for awhile, which gives you access to health insurance even when you’re working (which might mean you aren’t eligible for disability) and your employer doesn’t offer insurance or theirs is inadequate (as mine was; it was a meaningless “discount” program that covered nothing I needed). I don’t know if many other states have that kind of coverage, but I’d never heard of anything of the sort until my husband told me about it here.

    Anyway, I always wondered whether I was kind of imagining things or whether people who actually experience the system in PA think it does well. There’s a LOT of trouble, still (I mean, institutionalization is alive and well, *everywhere*) but at least it reaches a wider group of people than do some others…

  22. May 1, 2009 at 5:39 pm

    Please stop taking Effexor. You’d be better off taking most street drugs.

  23. May 1, 2009 at 5:52 pm

    Oh for fuck’s sake. Don’t lecture people on what they do to be able to work with their bodies. And don’t put them down for doing what works for them. Thank you fucking kindly.

  24. May 1, 2009 at 6:04 pm

    Please stop taking Effexor. You’d be better off taking most street drugs.

    Good job MISSING THE GODDAMN POINT.

    That comment nonwithstanding, this was a really affecting post, and I am amazed at the strength of everyone in this thread. I mean it.

  25. May 1, 2009 at 6:07 pm

    Solri, please stop being a fucking asshat. I’m sure that everyone here is perfectly capable of making informed decisions about their own bodies and determining how certain drugs do or don’t work for them without your wonderfully selfless and kind “advice.”

    Anyone else tempted to leave a comment like that should go do some disability 101 first. And just not hit the damn submit button. Because it’s going to get deleted, not to mention get you placed on moderation.

  26. May 1, 2009 at 6:10 pm

    Also, my apologies that the comment went through at all. Unfortunately, people who have commented before are generally approved automatically.

    It would probably be a good idea though if from this point forward we could go back to the post rather than engaging in the condescending derail attempt. Thanks.

  27. BipolarGirl
    May 1, 2009 at 7:12 pm

    Thanks to everyone for sharing their experiences in this thread. I see a lot of people dealing with this and doing their best to navigate a difficult and complicated system for the help they need to live their lives. I wish you all strength and, unfortunately, the luck you need to get through this.

    amandaw @19, thanks for highlighting that my underlying point is that EVERYONE should have access to the care they need and nothing, regardless of their socioeconomic class, support from family, language ability, immigration status, state you live in, etc. I think denying people effective care based on those issues can not only be horrifically damaging to the individual, but does our entire society a disservice by denying the participation of and contributions by these people. The entire world is a lesser space because these people are not allowed the opportunity to bloom.

    Thanks again for Cara for making it possible to post here – I was moved, inspired, and supported by the comments here and am honored to have had the chance to have this discussion with all of you. (except, of course, for Solri – but I’m heartened to see it took that long to get a nasty comment and the immediate reaction from commenters.)

  28. Mel
    May 1, 2009 at 7:22 pm

    Your story sounds a bit like a woman who went to my undergrad college, at first. She checked herself into the hospital because of her depression (responsible, right?), but when her therapist said she was okay to go back to school, the college decided that she might be a danger to other students (?) and couldn’t live in the dorms. But she also couldn’t move off-campus, because she wasn’t a senior, and they wouldn’t grant an exception. So she ended up moving back home and going to community college.

    There was a little student outrage, but it blew over and that was it. I don’t know that she didn’t fight it because of lack of resources; she might just have wanted to focus her energy on her own health. But it horrified me.

  29. Meredith
    May 1, 2009 at 8:18 pm

    Oh, god. This is my experience. You are not alone. It didn’t get to the lawyer point, but the similarities… wow. It’s been two years for me, and I’m graduating two weeks from tomorrow with honors after they wanted me to drop out of my own private well-ranked university. Because no one there is allowed to have problems, apparently. I got into a great law school and I’m headed there in the fall. I’m so glad to hear another success story.

    BipolarGirl, if it’s okay with you, could you get Cara to hook us up, e-mail-wise? I have some questions to ask you about law school and coping and stuff. Thanks. :)

  30. Allison
    May 1, 2009 at 8:45 pm

    I have bipolar disorder, diagnosed 8 years ago (or 9… I’ve lost track some how), after a failed suicide attempt. When I was 16 (which was 20 years ago) I was diagnosed with depression and given anti depressants that just made things worse. I’m pretty sure at this point that “my” bipolar disorder was childhood onset and that the problems I had from an early age was a combination of the bipolar disorder and ADD.

    Things have changed so much in the past 20 years. Both in terms of medication, acceptance in general, and the acceptance that children do have mental illnesses and they don’t just manifest in the early 20s or late teens. I was seeing a therapist for various issues who told me that I was doing this to myself and if I really wanted to I would shape up and be like other girls and I wouldn’t make my mother cry. When I described symptoms of panic attacks — at the time I had no idea what they were, I was 12 and scared of what was going on — describing it like having a heart attack, he dismissed me because children don’t have heart attacks.

    Thankfully a lot of those attitudes have changed and there’s much more literature and information. Plus the Internet is a huge bonus for trying to find and coordinate mental health services, research medications and therapy types, etc.

    I have to say Cara, I am surprised you take Effexor, I’ve only heard that it is not good for bipolar disorder and triggers mania. I was given it to treat my “depression” before I cycled into the worst mania and then worst depression of my life before the suicide attempt, but if it works for you that’s great.

    And I was lucky too not only to have a mom who fought tenaciously for me and who has always been my strongest advocate but also to have parents who could take care of me financially at various points in my life, including helping me pay my HMO so I could stay on the same program.

    I’ve managed to get down to only taking Seroquel and now my doctor has added Stratera for ADD (and it’s really helping. I can tell a big difference), but there are some changes I need to make to really take control of my life (cut out caffeine, exercise, eat better, start up with a therapist again). But the worst for me is over so far and I no longer feel like I’m owned and consumed by the bipolar disorder.

  31. WordSpinner
    May 1, 2009 at 9:17 pm

    I hate it–hate it–when people/the government/insurance companies treat mental illness like it “no big deal”. I’m lucky enough to have escaped any huge issues–I think I had an episode of minor depression going into seventh grade, and I have lots of anxiety, but nothing diagnosed or too effecting. My grandpa does, though. He’s bipolar, and his medicines don’t help much. Electro-shock therapy did. But what if he couldn’t afford that? He’d probably still be in his room all day and I wouldn’t get to see either of them for my graduation.

    And then there’s my aunt’s sister, who was also bipolar, and it was under control, until one day it wasn’t. And she’s dead, and it makes me so mad when people insinuate that mental health issues aren’t a real problem. Bipolar killed her just as surely as cancer could have.

    And those two were/are lucky enough to have getting the treatment they need(ed), at least mostly. I wouldn’t want to see what happened if they got the short end of the stick, and they would have if they didn’t get the resources. Because obviously, nobody needs therapy and drugs for mental disorders are easy to prescribe without constant monitoring.

  32. WordSpinner
    May 1, 2009 at 9:32 pm

    Sorry. The last part is snark.

  33. May 1, 2009 at 9:47 pm

    I have to say Cara, I am surprised you take Effexor,

    Um, again, this post is by BipolarGirl, not me. It’s a guest post, as it says up there in bold. I didn’t write it. She did. The credit belongs to her.

    And while I’m glad that you qualify with whatever works for her works for her, again, I’d really like to keep any kind of criticism of other people’s medication choices out of it. Especially since in my own experience with anti-depressants, though granted not to treat bipolar disorder, I’ve generally learned that reactions to them are rather individual.

  34. BipolarGirl
    May 1, 2009 at 10:34 pm

    Seriously – I will accept criticism of my medications from people who have reviewed my medical records and consulted with me and my psychiatrist. And only from them.

    In case you are genuinely curious, I take effexor only in combination with lithium, a mood stabilizer. The lithium prevents me from becoming manic, but is insufficient to prevent dangerous depression for me. The effexor allows me to treat that depression and function. In my experience and talking to others who are bipolar, this combination of antidepressant and mood stabilizer is fairly common.

    I also understand that if I were first diagnosed or first going on medication now, I might be on a different set of meds. Medications are changing and evolving quickly. However, I understand that every time I stop using lithium, it becomes less effective when I go back on it. I also have experienced excrutiating effects from effexor withdrawal. I also seriously fear my ability to withstand a depressive episode occurring between tapering off one and going on the other, which can last 3+ months. So even if another medication would be slightly better, the cost of switching is not at all insignificant.

  35. electrogirl
    May 1, 2009 at 10:37 pm

    This is so, so true, BipolarGirl, and you wrote it all down in a clear and coherent manner. Good work! By the way, I take Effexor too and it works for me.

    I have bipolar II, anxiety disorder, epilepsy, and what might or might not be psychogenic seizures. I am also privileged by way of my parents’ class and my race. Mom has worked for local government for years and gets good benefits, including the ability to keep a “disabled and dependent” adult child on her health insurance until such time as said child can get a job. Huzzah, I’m officially “disabled and dependent”. The label may be humiliating, but at least it’s covering my meds and treatment while I plod my way through college.

    If it weren’t for my family, I would be dead. No ifs about it. I used to cut myself with whatever I could get my hands on; once I broke the metal piece off an old floppy disk and used the jagged broken edge. The one time I tried to kill myself, I chugged down half my month’s supply of medications and nearly died in the ER. I spent a week in the ICU on a ventilator and IV recovering from that. If my parents hadn’t picked up on my mood that afternoon, forced their way into my room past the barricades I’d put up while I swallowed pills two and three at a time, and frog-marched me into the car, it would probably have been too late by the time I got medical attention. If they hadn’t had the money to pay for medication and therapy afterward, I would have tried again until I succeeded.

    Sometimes I read the articles that shed great big crocodile tears for people who kill themselves, and wonder how many of them could have been saved if they had only had access to the kind of mental health care and support that I got.

  36. BipolarGirl
    May 1, 2009 at 10:42 pm

    Sometimes I read the articles that shed great big crocodile tears for people who kill themselves, and wonder how many of them could have been saved if they had only had access to the kind of mental health care and support that I got.

    That’s exactly it, electrogirl. A kind of survivor’s guilt, like the people who survive a plane crash or something and struggle to understand why they were saved and the person in the next seat died.

    I’m glad your parents were there to help.

  37. May 1, 2009 at 10:48 pm

    I’m plain old depressed. I came off Effexor Januaryish after a couple years on it, and it was hellish. I couldn’t work for a while, mostly because I couldn’t get out of bed; later, I kept getting splitting headaches and vertigo and having to leave work early. After a very long time, things stabilized, and I could go about my day without any medication.

    I’m not going back on anything because I don’t have private health insurance. I could pay out-of-pocket, but what if one month I just couldn’t afford it? You can’t just take this stuff like aspirin.

    Talk therapy/counselling is a better bet, but the waiting lists…! For queer-friendly counsellors, the wait is even longer—and for ones with affordable rates, longer still…

    It is so incredibly frustrating that for mental health conditions, which are so pervasive, your access to treatment is entirely dependent on how well-off you are, or whether you have a white-collar job or not—just society my ass.

  38. Flowers
    May 1, 2009 at 11:08 pm

    Thank you so much for this post!! I’m bipolar as well, and it’s great to hear everyone’s stories.

    I’m extremely lucky to have a supportive family and a government job with great health care. But I am terribly upset that I always have to start that sentence with “I am extremely lucky.”

  39. bellareve
    May 1, 2009 at 11:40 pm

    This is one of the most powerful posts I’ve read on Feministe. I agree with you & many of these comments. Access to mental health care in America right now is atrocious.

    I have a “mood disorder” (no two psychologists agree on the specifics). History of self-harm, suicide attempts, hospitalization. I am currently covered under my mom’s insurance until I’m 25, which is in a few months, but after that I won’t be able to get any treatment or meds cause I’ll have no insurance and will be out of school. I’m terrified of how this transition will go. There is no way I can afford insurance, especially with my pre-existing conditions. And the docs have me pretty much addicted to non-generic brand pills which are hundreds of dollars per month without insurance.

    I’m lucky that I was covered during my adolescence, when I had a nervous breakdown. Unfortunately we are part of an HMO that limits which docs I can see, and I have had awful experiences with a few of the (homophobic, sexist) therapists I tried. Basically thanks to it all, I’m alive but I’m certainly not “better” or “well.”

    And there’s also the issue of stigma. I wish I didn’t have to write about these experiences anonymously. But to be “out” with a mental illness is to risk being turned down for jobs, judged, etc.

    Healthcare access/affordability needs to be SERIOUSLY reformed, as soon as possible.

  40. Ellen
    May 2, 2009 at 1:10 am

    This makes me so incredibly sad. @Jaleesa, I think we were writing at the same time because I never would have changed the subject after your post. I think the stigma for depression has gotten a lot better, probably due to massive marketing campaigns from pharmaceutical companies. But it is still intense for a lot of other mental health problems. And it doesn’t just suck that it is harder to get treatment depending on social class, but prevalence is also greater among lower ses. Probably because of chronic stress. I wasn’t diagnosed and treated with depression until college, but I was depressed all my life. I was told I was lazy, and my parents joked that I was the marathon sleeper, but nobody bothered to see try to find out what was wrong.

    I don’t want to pull a Solri, or to derail, but if any of you that hate effexor want to talk to me about how I got off it, Cara can give you my email. It really wasn’t that hard once had a doctor who knew what he was doing.

    And for those of you that can’t afford anything, cognitive behavioral therapy has worked better than anything else in my life. And if you can’t afford a doctor there are plenty of books on it. Yoga helps too (and yes I know that sounds classist -I hate how exclusive and expensive yoga is).

  41. joan
    May 2, 2009 at 1:17 am

    very moving to read everyones’ comments. My son, who is bipolar, just returned to college for spring quarter after taking a medical leave due to his psycotic break this fall, (because he didn’t take his meds). He is covered by college health care insurance while in college and his fathers insurance. I try to not ask him about compliance, I’ve been told to let go and let him learn to take responsiblity for his mental health because he’s almost 21. But it is so hard not knowing if he’s taking his risperdol. If he didn’t have insurance he’d (we’d) be thousands of dollars in debt. He also co-medicates w/alcohol and has been in conseling about all of it. Again, I’m not sure if he is going to his therapist at school but without insurance coverage we’d have to make some serious choices about that we havent had to deal with.

  42. May 2, 2009 at 4:52 am

    No one should have to justify taking the treatment that works for them.

    I take Effexor. It’s the only thing that controls my anxiety; I’ve tried five or six other antidepressants/antianxiety meds. I’ve also had to come off it, both titrating down and cold turkey (fucking insurance, both times) and, having been through withdrawals on several different meds including my narcotics, I can tell you it *is* hell to come off ot. It is a serious drug.

    But bodies are individuals. Everyone has a different body, and everyone’s body reacts to different things in different ways. I take a shitload of prescription medication. A lot of people with my conditions have tried a lot of meds and none of them work for them, or work well enough to balance out the negative s/e. Some of the meds I’ve tried which have been disastrous for me have worked really well for other folks. Some people do really well on certain alternative treatment programs that don’t do anything for me. Yoga *is* great for me but doesn’t do shit if I’m not also on these meds.

    So, yeah, it’s a hell of a drug, but you don’t get to tell her what she should be taking. She does. She has the right to self-determination. She gets to decide what works best for her life. And if the medication isn’t perfect, that isn’t then *her* fault for taking it. Only a society which does not respect the ultimate personhood of people with mental illness can sit there and shame those people for what they do to be able to live their life.

  43. Lounalune
    May 2, 2009 at 7:50 am

    This is a great post. However, could you add a “triggering” warning at the beginning? I didn’t realize until I had images of knifes dancing through my head, so perhaps it would be useful to other people.

  44. May 2, 2009 at 8:26 am

    Apologies, Lounalune, and added.

  45. Lounalune
    May 2, 2009 at 9:15 am

    Thank you!

  46. May 2, 2009 at 11:03 am

    Cara, a wonderful post. And indeed, your story and my story are similar. I am safe and happy today, having survived more than half a dozen hospitalizations, two suicide attempts, and many serious episodes of self harm. The therapy and the medication and the repeated interventions made possible by privilege saved my life, and I have never forgotten that — but it’s a point that bears making over and over again. Thank you.

  47. May 2, 2009 at 11:45 am

    … again, this is BipolarGirl’s post, I just posted it for her.

    I’ve just moved the notification that this is a guest post above the image. Maybe this will help?

  48. May 2, 2009 at 11:54 am

    Whoops, my bad — I tend to see the “posted by” and then move into the piece itself without thinking it through!

  49. Allison
    May 2, 2009 at 12:36 pm

    Cara, Bipolar Girl sorry for the confusion.

    And if I came across as critical that wasn’t my intention and I was surprised because I didn’t realize Effexor could be used effectively to treat bipolar disorder.

    I do apologize if my post sounded critical that was never my intention.

  50. May 2, 2009 at 1:43 pm

    Ugh, the school thing is such a big deal for me right now. I have … I don’t actually know what to say I have, but after a lot of experimenting with psychiatrists (glad to help me on my ‘figure out what meds I want to take’ journey, but not so helpful in the ‘deciding what to put down as a diagnosis’ part), I take Paxil and Adderall (I know I have ADD, inattentive subtype; the Adderall also helps lift my mood when I’m feeling overwhelmed), and Lunesta occasionally when the overabundance of stimulants in my life threatens to keep me up for days.

    I had been incredibly lucky, in that I went to an undergraduate institution with excellent healthcare (seriously, I *still* send the ladies at the health center cards and flowers occasionally, because they are just that awesome), where I could hop from counselor to counselor until I found one that I liked and who respected me (the psychiatrist, surprise surprise; the actual counselors were much less useful) and get all the meds I needed. Then I graduated and went to work at The Job From Hell, which, saving grace of saving graces, had the best health plan known to man. (No copay for anything, including mental healthcare, meds, durable medical equipment… anything and everything that could be paid for was paid for.)

    Now that I’m at a (big, well-funded, exceedingly bureaucratic) university where that’s not the case, I’m floundering. Sure, I can technically get the things I need, but it’s such a struggle that I wind up hoarding my supplies and trying to stretch them until the breaking point (which, naturally, causes major swings and crashes and makes all of the problems worse). The pharmacy, health center, and counseling center are all in different parts of the campus and they don’t talk to each other, which means that sometimes I have to walk back and forth for an hour to resolve issues that could have been taken care of with a five minute phone call. There’s so much paperwork and general barriers to care (“oh, you say you’ve got a diagnosis, a detailed assessment, copies of old prescriptions, and a letter from your last psychiatrist insisting that you do, in fact, need Adderall more or less daily to function? Sorry! You need to be evaluated by our people, and it’s a Schedule II drug anyway, so you have to get your prescription handwritten by a doctor (which requires scheduling an appointment weeks in advance), and they’re going to grill you on whether you really need it, in those quantities (the smallest dose possible one to four times daily, thus adding up to not even half of the ‘recommended’ dosage range on even the toughest days), and so on and so forth. But you say you want Paxil? No, no, we don’t need to see your medical records or anything, we give that shit out like candy! Here, have more!”) that I’ve wound up in some pretty bad places, and it’s been less than a year.

    None of this would be nearly the problem it is if not for the school-as-an-institution issues brought up earlier in the thread, though. I’ve known a lot of people ‘asked to leave’ for bipolar disorder (which I might have! or not! but I’m certainly not going to get that diagnosed while I’m in school!), suicide attempts … pretty much anything that might make the school look bad. Knowing this, I’ve been very careful to confine my exploration of symptoms to my anxiety issues (mostly Social Anxiety, but definitely some General Anxiety in there too), my ADD, and the occasional manic symptom that slips in. No mention of the downswings or erratic moods or occasional suicidal ideation or anything like that, because I don’t want to get kicked out.

    (I did manage to discuss those things while I was being covered at the Terrible, Horrible, No Good Very Bad Job, but that’s only because after months of driving home and contemplating driving off the nearest tall thing I could find, I hied myself hence to a psychiatrist and got myself evaluated and medicated. That’s how I found that while Effexor had done fuckall for me in college, Paxil did wonders and allowed me to get some control over my life, apply for school, leave the awful job, and so on and so forth. But I was only able to do that because my healthcare was provided by someone who had no links to my job – we simply paid into a popular HMO plan. If there had been the slightest chance that what was going on would have gotten back to the people I worked for, I’d probably be in a very, very, very bad place right now.)

    That’s one of the things that angers me most about mental health care in the US right now. In a surprising number of places, access to what you need is contingent upon you not really needing it. Heaven forfend you should access the services for which you’re paying (or to which you’re otherwise entitled) and actually need them – you might make the institution look bad/cost them money/do something messy. That’s jobs, that’s schools, that’s … okay, I can’t actually think of ways that you might get provided mental healthcare that don’t come through jobs or schools (at least, I can’t think of any that have these precise systemic issues). There is so much stigma against mental health issues that even the places pressured to have them (makes them look good, improves their numbers, is a great bullet point on a pamphlet) go to great lengths to ensure that people who might need help are quickly shunted off to become someone else’s problem.

    Ugh. I don’t want to be Someone Else’s Problem. I want to get the medications that work for me quickly and confidentially, and to move on with my life. That’s all. No different (for me) than taking meds for my migraines or eating food when I’m hungry; I need these things to live and function, and fuck you if you want to deny me that because it makes you uncomfortable.

  51. Ellen
    May 2, 2009 at 2:22 pm

    @amandaw, earlier in the thread bipolar girl commented that a lot of us hate effexor. So I offered my assistance to those who do. I was not judging those who don’t hate effexor. In an earlier post, I mentioned that I was on effexor for ten years. I was also not suggesting only using alternative methods. Yoga and meditation work very well for me along with my medication as well. That was also stated in an earlier post. I was suggesting meditation and cognitive behavioral therapy for those people who don’t have access to medication. I was most definitely not judging bipolar girl for what she takes, or telling her what she should and should not use. Please don’t read posts out of context and then lash out at them.

  52. May 2, 2009 at 3:00 pm

    No s** there’s class privilege involved.

    The number of mentally ill among the homeless population is completely staggering–and not only in America. Mental illness takes a huge toll on productivity, happiness, etc all over the world and we don’t take the necessary steps to treat it. It’s been shown over and over again that the ONLY way to achieve the best results is talk therapy+medication, and yet no one seems to want to pay for the talk therapy.

    Good post about living with bipolar. I had a close bipolar friend at one point, and I am ashamed to say that the illness majorly contributed to destroying our relationship. Cara, if anyone is interested in guest blogging on the subject, a post by/on the loved ones of those who have bipolar would be welcome reading.

  53. May 2, 2009 at 3:04 pm

    RE: Effexor. If what you take works for you, it works for you. I do know several people who have had a terrible time with that particular drug. It’s a whole different discussion, but the industry of psychoactive drugs is well worth examining. Yeah, other medications have severe side effects too–but WHY did it take us to long to get a black box warning on perscribing Prozac to younger age groups? Might it have something to do with the drug companies ferociously lobbying doctors? And by “lobbying,” I mean “bribing.”

    (full disclosure: Husband is a doctor, mother in law is a shrink, so I know from where I speak on the free lunch/pen/trip/steak dinner issue, having benefited from more than one. It’s getting better in the major academic hospitals, but it’s still an issue.)

  54. Chantal
    May 2, 2009 at 3:07 pm

    This post reads so true for me. I’m also bipolar, and it also surfaced heavily in my freshman year of college– I came in manic, went through some really awful highs and lows, and barely got out of that semester alive. I also believed I could fly at one point (delusion twins!) as well as believing God spoke to me and I was the Messiah. One night in my senior year of high school I had the most honest conviction that everyone in the world was dead except for me, and I wound up rubbing my hands raw while using a file to try and carve a monument to everyone I had loved. I was lucky enough that my parents could take the day off work and stay with me and make sure I didn’t hurt myself.

    My psychiatrist was about one step from putting me on lithium, because everything else I had tried wasn’t working. Somehow– and I don’t at all recommend this, nor do I espouse this, nor do I claim that you can do it too, nor am I making ANY claims about the universality of my experience– cognitive-behavioral therapy effectively controlled my delusions and mood swings, to the point that after three meetings a week for two months, I suffered only very minor swings and have not had a major swing since.

    It’s really hard for people around me to understand that I need eight hours’ sleep a night, and I need to get exercise every day (and no, I’m not a compulsive exerciser, thanks), and I need to eat a balanced diet, and I need to get away from people, and I need to have my space, because if I don’t I WILL have another episode.

    I have it pretty good. I mean, I am lucky enough that my mental illness is controllable, and now it shows up in only minor things like borderline-obsessive thoughts and moments of really rapid emotion-shifting. I haven’t had an episode in over a year. But there are some aspects of ME that are very much in line with “bipolar”, and people either don’t understand that I am still bipolar even if I am in remission, or they assume that everything I do or think or feel lacks any value because I am bipolar.

    At the same time, it took me so long and so much money to understand what works for me, and I am so lucky that I have had that. I’ve been a supporter and activist for mental health rights since…

  55. Donna
    May 2, 2009 at 3:16 pm

    I have had severe social anxiety for many years now, I am very lucky living in Canada where i am able to go on disability, even though the amount of $ barely covers living expenses. Social anxiety gives you lots of catch 22 situations, you want help, but you need to get it from people, and people and their judgments are your #1 fear. i hope one day I can find some way to become self sufficient, but with my experiences I feel more and more pressure to become an advocate , the system here is pretty broken too. I would like to see mental health be treated with the same respect that cancer and other diseases are, even just having a nicer looking mental health centre, that’s welcoming and comfortable goes a long way in making people feel less shunned because of their illness.
    I really see lots of issues for recent immigrants and POC (especially first nations/aboriginals) trying to navigate a system which is confusing and is still needing lots of work in addressing cultural differences. It’s a pain being so horribly shy yet wanting to help so many, so I do what I can through self -education etc. and I still have aspirations of becoming an ESL conversation tutor so I might be able to help a lot in that arena (English idioms are a great source of laughter and confusion) So to everyone here dealing with mental illness -hang in there

  56. Chantal
    May 2, 2009 at 3:16 pm

    Oh, by the way, have you guys heard of “The Icarus Project”? While it might be totally contrary to anything you’ve experienced, it’s a group affiliated with a lot of anarchist/other ideologies that focuses on self and community care and using the lens and unique consciousness of mental illness as a way of better understanding the world.

    Many of them don’t consider themselves diseased or ill or sick, and I’ve had great experiences with the positive outlook they provide. They tend to advocate, again, doing what works for you to make you feel good and able to function (if that’s medication or CBT or anything else), while at the same time providing an alternative to the despair many people feel after getting a mental illness diagnosis (I know that I had my only serious suicide attempt the weekend after I was diagnosed).

    Some of it is very anti-psychiatric-establishment, but it can be a good resource for people looking for different viewpoints on mental illness. I think groups like this and the scientific establishment (which I operate within) both have things to offer.

    Plus, it focuses partly on how psychiatric treatment is incredibly expensive and therefore not a viable option for a lot of people with mental illness.

  57. L
    May 2, 2009 at 4:09 pm

    @Electrogirl, I hope this isn’t too personal. I was just reading through this post and am wondering how you got labeled “dependent and disabled” adult child so as to get insurance “until such time” as you can get a job. I am in a similar situation and am paying for cobra out of pocket with student loan money. Anyway’s just wondering what state you’re in and what bureaucratic hoops you had to jump through. I’ve never written anything here before so apologies if this question is inappropriate. Whatever, worth a try right? I feel like I did everything. I have worked, not incapable now of working but with school I am incapable of getting a job with benefits and school ben’s just don’t cut it, recently aged out, blah blah blah. Did you have to be deemed incapable of working to be awarded extended ben’s?

  58. Kayline
    May 2, 2009 at 4:47 pm

    Thanks for an excellent post, BiPolarGirl. I have definitely witnessed the impact of class in my own struggles with mental illness. I have been diagnosed with severe depression/anxiety, along with body dismorphic disorder, and my husband has severe depression as well. While I had some amount of financial support from my family and managed to get a job with decent healthcare, his family is quite poor and couldn’t help him get treatment of any kind. As a consequence, I managed to get and hold on to a job after college, while he spent three years crashing on his mother’s couch and slipping deeper and deeper under. It was only a close friend picking him up and bringing him to live in her house and paying for his meds that gave him a shot at recovery. Sometimes I think about what would have happened to this person I love so much if that one friend hadn’t had the money and awareness to intervene, and I just want to scream.

    The meds thing is bizarre, one person’s miracle drug is another person’s poison. I actually take Effexor as well, and it is by far the most helpful anti-depressant I’ve ever been on. Combined with Wellbutrin, it allows me to be functional and sometimes even happy. And yes, if I miss a dose I can feel the withdrawal within hours. Also, I now have extra-vivid dreams, which for me usually means nightmares. I’m still grateful to have it. I take Klonopin some nights to manage the night terrors, and overall things are going really well. If some misguided git tried to take away my medication because they thought the side effects were worse than the disease, I’d be forced to whap some sense into them.

    I’ve noticed that some people find a drug that works great for them with minimal side effects, and assume that a similar drug exists for everyone if they just look hard enough. It’s important to remember that for some people, the right drug doesn’t exist (at least not yet). For us, it’s a matter of piecing together the best cocktail we can, with the least disruptive side effects, and then getting on with things. You can lose months or years of your life pursuing better medications, and the transition process is hard.

    I’ve started to delve into some of the research on mental health treatment, and overall Cognitive Behavioral Therapy is one of the most effective treatments that exist for depression and anxiety. Complete treatment should always include a med consultation, but if you can’t access or can’t afford complete treatment, you can at least get good books on CBT which may help manage the worst of the symptoms. Not a substitute for needed medication, obviously, but a coping tool.

    This conversation makes me wonder what mental health funding will look like in the promised health care reform legislation?

  59. BipolarGirl
    May 2, 2009 at 5:02 pm

    I think the meds thing is very personal and depends on so very many variables. I sometimes think of myself as having “the mental health problem that responds to the particular pharmaceutical cocktail I take” rather than “bipolar,” because I have other friends with bipolar who respond to totally different drugs and dosages and combinations than I do.

    So while I appreciate hearing about other people’s experiences with specific medications, I think of being applicable only to that person in that situation. The nearly infinite number of influential variables mean that the experience will be significantly different for me.

    Kayline, I am a huge fan of Cognitive Behavioral Therapy – it helped me identify my self harm behavior as a coping strategy for overwhelming emotions, which let me anticipate when I’d want to do it and make lists of less destructive coping strategies I had to try first. That’s the kind of thing that CBT is great for and it made all the difference for me in identifying and changing some super self destructive behaviours.

    That said, I would not have been in any shape to learn and apply CBT if not for the medication. I was so down and lost that without the lift of the medication, CBT would have been like trying to teach rock climbing to someone who could not get out of bed, just totally beyond my abilities. For me, the combination of therapy and medication was essential. Figuring out the necessary combination and having access to those different modalities of treatment was part of the privilege so essential to my recovery.

  60. May 3, 2009 at 12:47 am

    amandaw- I had known that PA was much better than other states for dealing with senior citizen’s health issues because I was a social worker working with seniors for 5 years. I didn’t realize how unique PA’s mental health system was until I read The Noonday Demon by Andrew Soloman Link here. He makes a point in that book to comment on PA’s system & how much better it is (Also comments that people near the borders will lie about their address to get care). Yes, there are problems but it certainly beats having nothing at all- and the care I got from them allowed me to stay in school & stabilized me enough to get a job. In fact, I’ve stayed with the agency since I got insurance so I could stay with the same doctors. I trust these people & that’s important. It’s also my way of giving something back- after treating me for nothing, now they get my insurance money, (although my insurance is kinda of a pain about therapy sessions- they won’t approve more than 2 at a time. But at least they cover them)

    The downside is that now I’m afraid to go somewhere else! Having this illness & the issues that go along with it have really limited so many of my options. I’d originally planned to go overseas to teach English when I finished my MA- but I realized the difficulties in trying to get treatment in another country, specifically the difficulty of getting the same medications. I really want to go on & get my MFA (the terminal degree) but worry that if I have a problem in another state I won’t be able to get the care I need. Also, in both cases, I’d be far away from any kind of support system if anything did happen. While my adventurer spirit loves the idea of going somewhere new & interesting, the practical side of my brain worries I’d destabilize like I did when I went back to school. And while my family is sometimes skeptical about it all, they do still help.

  61. Bumerry
    May 3, 2009 at 11:52 pm

    You are so right on all counts, Bipolar Girl. I’ve been a psychiatric social worker for a long time. Community Mental Health in my county just stopped funding ANY individual therapy for anyone, only group therapy. Just got out of the hospital 3 days after stabbing your brother 14 times? Group therapy. Also, a few years ago they changed their name from “community mental health” to a vague sounding no-name. There is no listing in the phone directory under CMH anymore.

    The people I work with mostly suffer more from poverty than mental illness in itself. And since I only work with severely mentally ill people, they suffer a LOT from their illnesses. The “lucky” people who qualify for disability insurance get about $400/month to live on typically. Rent for a bed (not even a room) in the worst, filthiest boarding house in the town’s most dangerous neighborhood costs $395/month. Housing assistance waiting lists range from 2-8 years in length. State based medical insurance doesn’t cover more than five psychiatric drugs per diagnosis, only the oldest and cheapest. Patient assistance by pharmaceutical companies requires that you count the incomes of all your unrelated boarding house mates as yours. Which biases it toward people with higher incomes / outside help who can afford to live alone. They also count unpaid child support or alimony as income, even with evidence that it is not being paid.

    And for a person with more income and medicaid, any income OVER $400/month results in a “spend down” of the rest of their income for the month before any treatment is paid for. So a person who has a benefit of $700/month has to spend $300 on medication or visits before one dime is covered, then all of it is. Living expenses are not allowed for – ALL “disposable” income is fair game. No money for bus fare, or soap, or toilet paper. Toilet paper is always a big concern. At the same time, a person with a higher benefit won’t be approved for food stamps.

    CBT is a lovely treatment, and I agree that it typically requires *already being fairly well on meds* to work if your illness is severe. Given that, CBT helps you unlearn negative thought patterns and identify who convinced you of them and how to tell them to STFU. It can help you learn that you don’t can’t know what other people are thinking unless you ask. It’s genuinely amazing for straightforward situational depression actually caused by negative assumptions and thinking, especially in couples not on the verge of divorce. But I’m both a psychiatric social worker of 16 years and a person with severe recurrent major depression, PTSD and one horrifying episode of steroid induced psychosis that gave me nonstop visual hallucinations of people killing my twin babies. And CBT is neither the only proven effective therapy nor worth fuck-all to me personally when I get really ill. If I’m sick enough to be in the hospital, forget it.

    All of the standard therapies, including non-professional support groups and talking out one’s problems with a caring and supportive person are effective. Just as with medication, different people need different things at different times. CBT just had huge financing from pharmaceutical companies twenty years ago to do bigger studies, just as a fad dismissing clinical observation and qualitative studies altogether came to a head. This meant that third party payers started mandating it and nobody’s ever had the chance to get funding to replicate therapy-spectrum studies.

    CBT has a central flaw: depression and mania are not thought disorders. Emotions CAN arise from distorted thinking. But emotions can CAUSE distorted thinking as well. Happy new lovers see no wrong in each other – as distorted a thought as any you’ll find. No illness needed, just emotion. People who feel shame are prone to all kinds of specific, culturally derived distorted thoughts.

    When I’m well or juuuust starting to feel depression or experience PTSD symptoms, the thought habits I learned in CBT work very well indeed. But both professional observation and personal experience have convinced me that it’s like gentle massage – excellent for a sprained ankle, and not nearly as effective for a partially severed ankle.

    In fact, when I was inpatient in December, one of my fellow patients finally said to our therapist after myriad glances between group members (not including me) “Please don’t insult us. If we could just think our way out of the hospital we would never be here in the first place. We’re not stupid or lazy, we have real illnesses just like any other.” The group cheered.

  62. karak
    May 4, 2009 at 5:33 pm

    I’m about to lose my health insurance, and I’ve been diagnosed with mental illnesses and an immune condition. The moment I realized my health insurance was about to go out, I sat on the floor, crying and then I started throwning up. Raw terror does not even begin to convey my feelings about being poor and ill.

    I’m glad you got help that worked for you, OP. I hope, someday, that so many others can get the help I’m so terrified of losing.

  63. shah8
    May 5, 2009 at 4:35 am

    Chapter 5 of Annette Lareau’s Unequal Childhoods: Class, Race, and Family life will appeal to people interested in this topic. I suppose you can read it on Google books

  64. MaggieK
    May 5, 2009 at 11:29 am

    I too am Bipolar, and I’m embarrassed to say that it never occurred to me how much my high quality of treatment hinges upon my parents’ socioeconomic status. Thanks for opening my eyes.

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