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Wednesday, 25 September 2013

The Lament of a Black Swan: I don't need my defamatory label!

Fay Thomas

Now surplus to requirements?
The first time I told someone about my bipolar label, it was an agonisingly big deal. I rehearsed and thought it through carefully. Finally, using the language of the times, I declared my manic depressive 'otherness' to a friend. I was met with a hug, some questions and reassurance. It makes no difference to those who hold you with affection. But other situations can get tricky. Do you spill the beans on a first date and if so, how? Or do you wait until it's serious and then cope with the feelings of betrayal and humiliation that arise? Do you tell before you meet his parents, or wait until the night before you move in?

I remember one partner who was happy to have a manic-depressive writer for a girlfriend. A journalist with a formidable reputation, my mental health status fulfilled his romantic notions of living out life Bohemian style. The first time he witnessed my ascent into full blown mania he seemed intrigued but stayed around to discuss it. After all, someone who stays up all night to order flowers for everyone they know, might be a fun person to live with (sometimes). But descent into the murky depths of a depressed hell usually followed my upswings. Most partners find it difficult to fathom why you're still not dressed at 3 o'clock or can't find the energy to get out of bed. And prior to marriage there were hurtful discussions about children and whether or not you could/should have them. What was the risk of offspring being similarly afflicted?

But psychiatrists were wrong that I would be unable to escape their clutches. I have not seen one for 23 years and have been medication free for thirteen. The bipolar label belongs to my previous incarnation, a woman I barely recognise. It's a humbling thought that psychiatry's no-hope philosophy so permeated my life that it felt necessary to have such life-crippling discussions. Its particularly enraging that my label still follows me around. Apply for a job and I will be asked 'are you currently, or have you at any time in the past suffered from a mental disorder?' A box is ticked and I'll find myself dispatched to a doctor who will ask degrading questions and attempt to turn me back into a psychiatric patient. It might feel just as it did years ago when I was sectioned and a nurse stood over me while I took my pills. It's implied that I don't know my own mind and must do as I'm told.

GP visits are always fraught with anxiety and humiliation. Whether I need a cervical smear or am complaining of a lingering cold, the consultation will always turn to my mental health. No-one will bat an eyelid if you've had glandular fever or a miscarriage, but a narrative of 'mental illness' often obscures realities. Take the case of Sarah Eyre, who was misdiagnosed as bipolar and even underwent ECT. It was only when she presented her symptoms without mention of the word 'bipolar' that she was correctly diagnosed with multiple sclerosis. Her label had followed her from one doctor to the next. It has been suggested (in Canada) but not yet in this country, that psychiatric diagnoses can be defamatory and healthcare providers should be cautious when communicating them.

DSM and ICD-10 diagnoses are 'static' aside from a few remission indicators. Many psychiatrists have no qualms about telling their patients they have a lifelong disease and will always need a chemical straitjacket. But for those of us who have shown otherwise, they might do us the favour of developing recovery markers so that we can officially be 'undiagnosed'. 

The mental health system has shown little interest in 'unlabelling' people, regarding those like myself as 'black swans', outlying statistics that hardly ever occur. If you believe that genes are your destiny and 'mental illness' is a lifelong brain disease, this is likely to be a prophecy that is self-fulfilling. The thing about black swans , though, is that they are also the exceptions that falsify the rule. All swans can’t be white if some aren't. Even if many don’t recover from mental health problems people like me show that some do, and that recovery is possible.

My label initially brought comfort and validation for my struggles. It also ensured that I was given meds - some of which I desperately needed at the time. But the fact that people are never 'unlabelled' reflects psychiatry's disavowal of recovery. It is discriminatory and it affects lives.

The story of my healing journey is a long and circuitous one, in which psychiatry played a meaningful role. But while I am no longer disabled by bipolar mood swings I remain stigmatised by an outworn diagnostic label. It took merely seconds to apply, but its impact remains for a lifetime. Those of us 'in remission' wait patiently for the black swans to pile up. Biological psychiatrists might then accept that healing from 'mental illness' - even serious 'mental illness' is possible. But that will mean that their model of mental disease has crumbled and we will be in a time of paradigm shift. I can't wait.


  1. Angela Gilchrist, Clinical Psychologist25 September 2013 at 12:45

    Interesting post. I've long thought that those who make psychiatric diagnoses need to be held more accountable for them and that consideration should be given to removing them where they are no longer applicable. It is obvious that this needs to be done, as a psychiatric label can be deemed to say something about that person in the way that other medical diagnoses do not. Taking those things into account, the idea of labels being defamatory is an interesting one that in my opinion, should become a reality in this country.

  2. You don't say how old you were when you were diagnosed, but I had to wait until my mid thirties and I've got to say that having a diagnosis does alleviate a measurable amount of despair. At last you can say: This is what is wrong with me. You can look back and see it and be more forgiving of yourself.

    Then again, having said that, I'm not finding that diagnosis really gives me a way forward. The only way I know how to become capable is to become hypomanic, which would be fine if only (a) I could call upon it at will, and (b) it didn't lead to ridiculous, deep depressions where I lose everything that mania hasn't already taken away.

    More and more lately, I'm wondering if there's a large part of it that's all about managing and meeting expectations of capability, as if instead of struggling along, my brain keeps finding the fast forward button, which is all fine and exciting until you end up with your hands full of chewed up cassette tape.

    Oh well, when the metaphors start it's time to stop.

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