Celebrating Bipolar Overawareness Week

Both Philip at Furious Seasons and CL Psych are asking questions about the overdiagnosis of bipolar disorder. (Philip adds more on this topic since I wrote this–the evidence is piling up) CL psych goes as far as to suggest that yesterday mark the beginning of a week commemorating Bipolar Overawareness:

So I propose that we start a Bipolar Overawareness Week, complete with a website linking to a questionnaire that makes statements like:

  • Do you know that your symptoms are probably not indicative of bipolar disorder?
  • Ask your doctor if you’ve been misdiagnosed with bipolar.
  • Find out if you are unnecessarily taking Zyprexa today.

Let’s see if we can get the National Alliance for the Mentally Ill on board. Surely they want to make sure that patients receive the proper diagnosis. Surely drug companies, with their interest in good science and good medical practice, want to help out as well, since they want to make sure that their drugs are prescribed properly.

I think these are very good questions for probably hundreds of thousands of people to be asking. Okay, so I’m a little more radical than Philip when it comes to coming to conclusions. He points out that the research he is reporting on is based on just one large clinic in Rhode Island. (His later post indicate the problem most assuredly goes beyond that) I basically question the label in almost every instance since I’ve seen even the most classically afflicted bipolar patient recover with alternative methods. Also I worked in mental health for 12 years and saw exactly who was being diagnosed. Granted some of those people had very difficult problems and I am in no way minimizing the real suffering people experience.

Philip says of the Zimmerman’s report on overdiagnosis:

For example, Zimmerman uses familial history of bipolar disorder in his paper to rule out bipolar disorder in people in the study who did not meet formal clinical criteria for bipolar disorder according to the Structured Clinical Interview for the DSM-IV (SCID). In other words, if the people didn’t test out as having bipolar disorder and there was no family history of bipolar disorder, then Zimmerman determined that these people had been bad diagnoses if they had previously been given a bipolar disorder diagnosis.

So while we’re looking at Philip’s piece I will take seriously, for myself in any case, the question about family history. I’m not one to buy into the genetics model, instead I say we certainly learn and are nurtured by the people who raise us. We eat what they feed us and learn from their behaviors good and bad. This effects physiology and mental health.

In any case, if I’m to use Zimmerman’s standards, much like Philip I have no family history of bipolar disorder. There is one drunk and one suicide, and aunt and a great uncle respectively. My father was a raging asshole, but he did not have mood swings otherwise—his rages were unpredictable and intermittent. Of course in today’s loose labeling, rage would qualify as mania, but my father displayed absolutely no other symptoms of mania save cheating on my mother. And I agree with Philip that sexual indiscretions are not a good measure of mania. My father was home every day for dinner and was very cautious with money. He was not running around wildly with the women he had affairs with and did not seem depressed in any way. Anyway that’s the family history.

When I was diagnosed as a result of taking hallucinogens and reacting to them with a psychosis that was associated with pre-menstrual syndrome. (I took hallucinogens a few times and the only times I lost it was when I was premenstrual—this I know because each time I was hospitalized I got my period the following day.) I’ve never had anything resembling psychosis without it being drug induced. And I haven’t really had anything strongly resembling real hypomania either, though my energy levels do fluctuate and I’ve suffered from anxiety that has kept me awake at night—also in retrospect adverse reactions to psychiatric drugs. The doctors at the time I was diagnosed did scratch their heads when no family history was revealed but they still saw fit to smack me with a label based solely on the drug induced psychosis which has since greatly diminished the quality of my life. In all the ways Philip says it can:

As a result, hundreds of thousands of people are winding up on meds they don’t need, meds which injure some people (not everyone. Yes, I know some people do derive some benefit from them) and a diagnosis that follows them for life and can lead to discrimination in employment, health and life insurance and personal relationships. That’s serious stuff.

After I accepted the label I fell into accepting drugs without question and now in hindsight I see that I took drugs to get rid of side effects of other drugs. And I took drugs to cope with mild characterogical problems which should have been dealt with in therapy. The drugs never helped and it was my doctors way to simply increase dosages when I complained of irritability or any kind of existential distress. Now I know it was the drugs causing much of the irritability. In fact Risperdal causes irritability in me and my doctor kept raising my Risperdal dose to treat the irritability that very drug was causing. Klonopin causes irritability too and so did the SSRI’s which also caused agitation. I was given Klonopin and Risperdal both to deal with side effects. I did have depression when I was given the SSRI’s but I think it was a result of the neuroleptics they gave me.

I was fine before I took hallucinogens. I did have very severe PMS as a young woman—symptoms that came very clearly only prior to my menstrual cycle— but prior to my illicit drug experimentation I found a nutritional doctor who completely relieved my PMS symptoms through diet and nutrition. I was only 16 when I started work with that doctor and sticking to a difficult diet at that age was something I was not ready for. Once I took the hallucinogens and was convinced by psychiatrists that I was profoundly defective the good nutritional habits went out the window for the next two decades. Why I let psychiatry blind me so deeply, I don’t know. I did give up though on taking care of myself naturally even though I had seen it was a very successful treatment for me.

Like Philip I have questions too. But they are slightly different questions. I tend to believe that most of us whether we fit the classic criteria for bipolar disorder or we are just a bit funky like me can recover. I find the labeling of difficult mental health symptoms destructive and disempowering. Places like Soteria have demonstrated that the severely impaired can and do recover. My own experience in drug withdrawal circles, being involved in Safe Harbor and running this blog have uncovered hundreds of people who have recovered from serious symptoms of mental illness through meditation, diet and nutrition, yoga and other eastern body movement disciplines, neurofeedback etc.

I’d like this to be bipolar unawareness week. Let’s just take care of ourselves and not diminish ourselves with labels that discredit and stigmatize us. Yes, that is not a likely scenario and I know that labels are sometimes practical and we will always use them for better or worse. But I personally no longer use clinical language to explain my well-being and it helps a lot in reclaiming myself as a complicated human being as we all are, mental health diagnosis or not.

For another twist on labeling see what Bipolar Wellness Writer said yesterday:

What if your DSM diagnosis was: Creative Genius, Sensitive Paragon, Thoughtful Humanist? Would you still feel bad, or would you just feel special?

I’ll settle for a mixture of all those labels and feeling special.

For my declaration “Undiagnosising Myself,” see here. It’s a bit angry and rambling and someday I’ll redo it so that it’s more organized, but it’s a decent piece of writing if you like a bit of a rant.

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About Monica Cassani

Author/Editor Beyond Meds: Everything Matters

18 Responses

  1. Dear Gianna,
    Superlative post! You discuss the problem with great clarity and passion! Thank you! This is such a tremendous problem that I wish we could raise money to put advertisements in newspapers across the country.

    I, too, was diagnosed with bipolar disorder. I, too, have no bipolar disorder in my family. I, too, became so much sicker after taking medication (that I thought I would die).

    I, too, sought help. And not one of the therapists or psychiatrists I saw for 25 years (on and off) ever diagnosed clinical depression although the symptoms were classic.

    If any of these people had given me good advice, or asked the right questions, I might have been able to heal myself. In a way, I’m grateful for the lack of diagnosis because if I had started taking medication far earlier in my life, then I don’t think I’d be here to “shake my fist” in agreement with you.

    Please sign me up as another Bipolar Overawareness Week Blogger!

    Susan

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  2. Pablo

    This is what I thought after reading your piece. Everyone needs to make sense of their own life. Human beings are creatures that occupy time as well as space – other creatures live much more in the moment with little sense of past and future. We need to construct a topography of time, a map of life, and this is our story. This is where our fascination with stories and storytelling comes from – this need to map time and locate ourselves within it.

    A diagnosis is a substitute for a personal narrative. It’s an attempt to give someone a story when they can’t make sense of their own, but it’s inherently unsatisfying. It puts that person in a box and makes the individual fit the story instead of the story fitting the individual. Part of the recovery process is the process of reclaiming your own story – the story that makes sense of your life, not someone else’s. This is what you are doing. The more you do it, the more you reclaim your own life.

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  3. Labels, well, I haven’t been labelled officially, but if, it would “without any doubt” have been a “schiz”-label. It helped in one single regard: through my knowledge of the ideas and experiences of people like Lacan, John Weir Perry, Laing or anyone else who ever has tried to understand what really is the nature of the problems, psychiatry fancies to label “schiz” (and that’s that – no further understanding required), I finally was able to ask myself the right questions and get to know myself a lot better, which on its part got me on the road to recovery. In any other regard I experience the label as an assault on my humanity. Actually, while in a state of acute sensitivity, I wasn’t even able to write down the word (I virtually couldn’t get the pen down on the paper or hit the keys), not to speak of having to listen to my therapist saying it, without feeling myself, or: my self, being reduced to something near zero. A trauma on top of a trauma.

    Neither here: no family history of “madness”. Only an abusive, over-controlling mother (whom I haven’t forgiven: kids mean responsibility, also the responsibility to critically examine one’s qualifications as a parent from time to time, especially when things start to go wrong), and an evasive, absent father – the “classical” setting, you might say. But, oh, I almost forgot: we did have a cat!…

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  4. Great piece, Gianna!
    Pablo, I love the way you put it–“Part of the recovery process is the process of reclaiming your own story”–this is so true. Writing can be a very powerful tool in recovery. I’m using it extensively in my own recovery.

    Like Susan mentioned above, I was also diagnosed with bipolar disorder. I have no family history of bipolar disorder (many depressives on my mother’s side, and one cousin who may be cyclothymic). And I got a lot sicker on medications. I won’t deny that I had some bipolar symptoms…but I don’t think any of what I experienced was severe enough to warrant a lifelong sentence of chemical intervention. Therapy might well have been enough.

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  5. naturalgal

    Hi,
    I take issue with saying “I don’t have a family history,” as one more proof against it. I do have a family history….and that still doesn’t prove anything. (It just makes the docs more label happy.)

    Just because you have family members who have been labeled…or even never labeled….but had weird behavior doesn’t prove that they were bipolar…or mentally ill. Maybe they also had good reasons for their behavior. Reasons that had nothing to do with it “running it the family.”

    Even suicides running in the family doesn’t prove mental illness…it proves incredible pain…and at some point seeing death as a way out.

    If your family is Catholic….you tend to be Catholic…if you family is Methodist…you tend have beliefs along those lines too. Remember the gene theory and the chemical imbalance theory have never been proven.

    So, the family thing doesn’t prove anything. It shouldn’t be pointed to one way or another.

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  6. Several years ago when my finance’s daughter was diagnosed with BPD after a suicidal gesture, I questioned it. My therapist said the particular place she stayed abuses a BPD diagnopsis to a fault, but the purpose is to have a diagnosis to keep someone coming out of an acute care facility in the loop/in the insurance process/in continuing in care so as to find out the real issues. It is considered as a temporary catch all.

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  7. Gianna,

    Great post!
    I think Philip takes it to a certain level, and then drops the ball.
    You pick it up, and take it to where it needs to go….

    At the risk of being simplisitic, this is how I see this thing –

    There was no real treatment for ‘bipolar’ back in the days when it was one percent of the population…..other than lithium – it’s the only drug that has ever shown any efficacy – A far as afety, that’s another post…..

    But, the anti-convulsant group of meds were a money grab – lithium bottomed-out. They were designed (many, decades ago – for seizure disorders – not ‘bipolar). And the atypicals – well, the old ‘tranquilizers’ did a pretty good job at turning people into zombies…..why not tout a new version (now, they’re deadly) – why mince words…..25 years off a person’s life – that’s deadly….

    None of them work – nothwithstanding lithium…..sure, people feel a bit ‘better’ – for a while, until the increased tolerance turns up, and the side effects……many of these drugs have had clinical trials of only several weeks or months…..that’s all. The side effects rear their ugly heads after years on the meds, and the brain goes through horrific damage – again, why mince words?

    And yet, people are placed on them for life. This is it in a nutshell – the drug companies were able to pull this off with about 1 percent of the population, and now they’ve gotten greedy – expanding their markets……

    IF the disorder is gentic, and has historically effected only one percent of the population, why is it four percent now? The math doesn’t work – unless there’s been an overwhelming desire for people to begin to marry artists, writers, and othewise very creative people, and have offspring….(oops, I’m sterotyping)…..

    The math doesn’t work……It has become an almost ‘cool’ thing to be ‘bipolar’ now…..and for others, an opportunity to ‘finally get the diagnosis and treatment’ they’ve been needing for so long……

    The problem with the ‘diagnosis’ is that it can prevent a person from getting a job, a hunting license, driving a commercial vehicle, etc…. who knows what’s down the road….the right to vote? the right to marry? who knows?
    And, the ‘diagnosis’ never goes away – never…..Talk about the perfect scenario for those who seek power and money…..
    Custom-made….

    The problem with the ‘treatment’ is that the human brain wasn’t designed to take in large amounts of toxins for long periods of time……simple? Maybe so, but true nontheless. There is a reason we have a blood brain barrier – it’s to keep this stuff out of the brain, not to put it into the brain…..

    They’re after a four-fold increase in profits – with drugs that don’t work – they have never worked…..and going after such a huge marketshare will come back to haunt them….

    There will (inevitably) be sons and daughters of lawyers, politicians, and influential people who will get caught up in this very wide net……they have taken on more than they can handle…..

    The good news? The truth about these ‘medications’ will begin to be seen in the limelight – and, God have mercy on those souls who have been at this game – the key players in the pharmaceutical companies….I have a feeling this thing ends up in court – not civil court – criminal court, and heads will roll – as well they should.

    Passionately,
    Duane

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  8. Sara

    I love this post too. It’s really eloquent and echoes my thoughts about these issues very closely. Great writing!! I can just imagine how empowering you are for so many sufferers out there.

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  9. it’s good to be out of the medicated haze, eh?-)

    if you can also let go of the need to fight the system that screwed you, sky’s the limit.

    otherwise, you’re running around with a multi-billion $ titanium-hefnium pharmaball tied to your ankle. don’t go swimming with sharks!

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  10. Val

    It’s funny how hard they seem to push for even the borderline diagnosis of bipolar — @ each & every visit w/my new therapist I am being quizzed about any manic symptoms… I’d best be sure to keep answering in the negative!
    Guess I’ll keep bland ol’ chronic depression (or dysthemia according to the new terminology) — but no thank you on the antidepressants please…

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  11. The genetic factors – whether they exist or not – have been discussed for generations. If it is true, it does not hold as strongly as it should — the German goverment under Hitler separated twins from their families (with mental illness issues, and they were all Swedish families) and then from each other. The correlation of family-to-bipolar was quite high, but having one twin being bipolar and the other not was more common than it should have been statistically.

    It is quite likely that a major factor is environment. I know that my mother was crazy (probably bipolar – diagnosed but not treated, but I don’t know the actual diagnosis), and her mother is exactly like her, as are several of her sisters. But my brother did not get that… as far as I know… however, he DID commit suicide at age 16.

    Hugs,
    Moss

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  12. Who the heck posted #15?? Really funny! Well well, if anyone wonders what all the ås, øs, and æs are about: “Labels vs. your own story” at my blog.

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