Incurable romantics

I feel that I know something about cancer. Like most people, I have lost a relative to it. I currently have more than one person I would consider a friend undergoing cancer treatment. When I worked in the NHS, I helped the vascular surgeons undertake audits into GP referral times and survival rates for breast cancer. A few years ago, I ran a 10k race, despite never having run anywhere in my life, simply to raise money for Macmillan Cancer Support. I’ve read novels about cancer too, most memorably Lionel Shriver’s The Post-Birthday World (2007) and So Much for That (2010).

But I am aware my knowledge is flimsy, that it’s incomplete. It’s based on second or third hand knowledge. It draws on opinion and fiction as much as it does on fact, because it simply isn’t something that’s happened to me. Which is why I would never, ever presume that I understood cancer, let alone that I had a broader view of it than someone who is actually living with the disease.

So why do people think it’s OK to do this around mental health issues?

This morning my friend Tracey (@EhOhSaysYes) and I had a frustrating Twitter conversation with someone we’d never “met” before (I’m not going to name him here; anyone interested can easily find the conversation). He doesn’t have bipolar. He doesn’t claim to have lived with or supported anybody who does. But he’s been reading some books, and he is very certain about the fact that bipolar confers advantages on those with the diagnosis. I’m well aware, of course, with the bipolar advantage idea, which has been most thoroughly explored by Tom Wootton. But my personal experience, which I shared with this person, is that it’s hard for me to feel my bipolar has “advantaged” me. It’s true that I have achieved an awful lot in my life, but much of it has been despite my bipolar and there is a recurring pattern of my achievements being destroyed when the next episode hits.

But, persisted the questioner, what about bursts of creativity? Well, yes, I can feel very creative when I’m hypomanic. But then hypomania can all too often lead onto being so ill that I can barely keep myself alive, let alone create. And, I explained, sometimes the stuff a person creates when they are high seems like pure genius at the time yet turns out in the cold light of euthymia to be grandiose, self-centred, or difficult to follow. And I was able to participate much more fully in, for example, music, when I was asymptomatic.

The questioner was not to be deterred. He had read books, the kind where someone tries to apply our current understanding of mental health diagnoses to individuals from previous eras, based on the necessarily incomplete evidence history has left for us. He believed that such a high rate of creativity must be evidence of advantage. Tracey and I pointed out to him that for every successful, creative bipolar in the public eye there are countless others picking over the failed relationships, the hospital admissions, the bankruptcies, the disrupted or ruined careers. From our perspective, the disadvantage of bipolar outweighed any benefits.

“Evolution,” declared our interlocutor, “is so clever that bipolar wouldn’t exist unless it was needed. Problem is construction of society.” And the answer? To teach school children about successful historical bipolars. In other words, we, the people with bipolar, don’t get to decide if our bipolar is a problem because “evolution” trumps our experience. Despite the body of research indicating the condition’s hugely deleterious effect on social functioning the pervasive myth of bipolar creativity consistently wins out.

Only, wait a minute – if evolution is so clever it does not make genetic errors, then by this logic cancer, too, is “needed.” Is it true, then, that there is no inherent problem with cancer, that we’ve constructed the problems ourselves, as a society? Funny, isn’t it, how when the myths about life-threatening mental illness are applied to life-threatening physical conditions, they become distasteful?

I love the phrase, “No decision about us, without us” but I would like to extend it. Everything I do, from attending focus groups, to speaking publicly about bipolar, from blogging to giving media interviews, I do because I don’t believe there is any need to have any more conversation about us, the bipolar community, without us (the essence of my objection to Darian Leader’s recent book on bipolar). The NHS, the media and academia are finally waking up to this message, and it’s one that mental health charities have been pushing for years. And there are plenty of open, honest people of all diagnoses who are willing to share their experience of their condition, the care they receive, and the attitudes they experience.

We’re ready to talk. But we need people to be ready to listen. And that means giving up romantic notions about incurable conditions.

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About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
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21 Responses to Incurable romantics

  1. Glen says:

    I agree with you, mental health issues are a big hurdle that many many people never get over. I can not speak for others, but it is the feeling that everyone is against me and that I’m useless and that my life is rubbish that makes me fight. If I was happy then I’d probably have stuck working at Tesco full time, I’d have worked my way up to some management job and settled down with a hose and wife and kids. But my mental health issues made me bad at my job at times so never progressed, rubbish in relationships so never married, terrible at organising my life so never a home owner. But all the time during the good days I’ve pulled my life back together, felt rightfully as good as anyone else, signed on to a degree and in spurts completed the work for it, had some very good if short lived relationships, and enjoyed hobbies and moved to new locations and found flats to live in or holidays to go on.

    Maybe it’s my mental health issues that sometimes make me appear confident and creative and spectacular, but also withdrawn, anxious and stupid. It’s a choppy life which I love and as suicidal as I can get I try to always see the beauty in the universe whether I’m alive in it or not. I am sure that even something as destructive as cancer has propelled people to be more successful and to live life to its fullest, with mental health I find that when I can do it, then I will, where without bad days I’d maybe not have ever taken risks.

    I do wonder if others feel the same, in the end we are all different, your pain is your own and worse then anyone else’s, no person can dictate how any serious any situation is or how others should deal with it, our struggles are personal.

    • Glen, I like that phrase “a choppy life”. That really sums up how I feel about it. By all means celebrate where BP does confer benefit, creativity. But to just blithely assume that that outweighs or even balances out the bad – especially when people who live a similarly choppy life are telling you otherwise! – is just silly and naive.

  2. Mike Crape says:

    Very well done. Sadly until society accepts the sameness in physical and mental conditions and “injuries” there will be those who will be experts without experience. It must be as you say “No decision about is, without us”. Thank you for sharing.

  3. phylor says:

    “We’re ready to talk. But we need people to be ready to listen.” People don’t like their “worlds” shattered by the truth; it’s easier to believe the generated stereotypes, than to look further, dig edeeper. Folks with chronic pain and/or chronic illnesses have to be strong advocates to be heard; the stereotypical ideas (spouted by medical professionals, too) creates a false image of what that person is really going through. We are constantly told by people that have read an article, seen a face book posting, or heard a snippet of something on the news, how to “cure” ourselves; what we are doing “wrong;” what illness we really have or we are slackers and fakers, with the pain and other aspects is “all in our heads” Like your twitter “friend,” they have become experts and feel they know more about what we are dealing with more than we do.
    hypomanic episodes might give me the energy to create; but as you say, this doesn’t mean that my creative ideas are any good or can be carried out by myself or someone else. Hidden in another blogging platform is a blog I “created” during a hypomanic episode, complete with email, and the beginnings of a facebook presence. It’s a good idea, but when the energy left, the truth of the scope of my project became evident. I couldn’t do the project — too much for me to undertake — and a portion of it, I discovered later, already existed.
    Let’s hope if we jump high enough, shout loud enough, and preserve long enough, folks will hear what bipolar disorder is and isn’t.

  4. butterflywgs says:

    Well said.
    And OMG YES to the ‘thinking we’re creative and brilliant’ when hypomanic. I’ve written some total crap, or at best, average, stuff – which I thought at the time was giving humanity the benefit of my insights :-p

  5. butterflywgs says:

    Glen: ‘Maybe it’s my mental health issues that sometimes make me appear confident and creative and spectacular, but also withdrawn, anxious and stupid.’ This. I find people don’t get how I can be ‘loud and fun’ (actual words of a friend) at some times and barely say a word due to social anxiety/ depression at others. My natural well personality is quiet and that’s OK. (Same friend who said oh you’re not bipolar, I’ve never seen you manic – yeah, anything below blowing your savings on a flight to Australia at a whim doesn’t cunt as (hypo)manic *sigh*).

    • Glen says:

      I can relate to this, my normal days are quite and refrained, it’s who I am. I am not as a rule confident and out going, those days are exceptions. Again I’m used to people saying I’m normal because others are like that normally, what not many people have seen are my bad days when I am so withdrawn and my brain in screaming so much that I can not interact with others. Those days when I must are always a challenge of damage control, trying to hide how I feel to the world. When I am having a good day I have no such fears letting people see it. So to the world I’m either social or anti social, never manic or depressed.

  6. butterflywgs says:

    OMG OOOOOPS *dies* *can’t type lately* You might want to delete that comment and I’ll repost?! *dies more*

  7. Red says:

    It’s strange that Bipolar has this stereotype of creative genius in a way that other mental health problems don’t, it’s hard to think of ‘advantages’ for other conditions that equally seem to have persisted through the ages. Sometimes Bipolar is seen as a less stigmatizing label because of these so-called positive connotations, but I think you’re right to point out that this hasn’t exactly increased the public’s understanding of what the experience of bipolar is really like

    • No, in fact I would go so far as to say the opposite – it’s given the public a very false view of bipolars as “lucky” in their diagnosis, because they are “party people” who are immensely creative. I doubt that many of the general public are aware that bipolar is categorised as a severe and enduring mental illness alongside schizophrenia and other psychotic illnesses what are most definitely not considered desirable diagnoses x

  8. Bipolar Life says:

    Well I am bipolar and also the *least* creative person on the planet! Did this person have any ideas about what other “advantages” I might have been gifted by my illness?

    Seriously, spare me. Even if did get some magical “advantage” as part of my illness, it would be far outweighed by the portion of my life that has been a living hell anyway.

  9. deckofpandas says:

    Thanks so much for this. This sentence will form the basis for my new “test for unfairness”: “Funny, isn’t it, how when the myths about life-threatening mental illness are applied to life-threatening physical conditions, they become distasteful?” I have a similar one for gender issues, specifically reversing the genders in a situation and seeing how it looks then. I know this is rudimentary, but it has saved me some cognitive errors in the past…

  10. When I think of Bipolar, I don’t think of Stephen Fry or other “talented” or “creative” celebrities.
    I think of my friend Archie, who has been in and out of mental institutions for the past 10 years or more. Archie,who has put on a horrible amount of weight through the drugs he has to take, is often forced to take under section. Archie, who hates to take his medication because it leaves him like a zombie and unable to feel or experience life, so he stops taking it and ends up threatening his neighbours with a knife because of something they’ve said/done, and is inevitably dragged away kicking and screaming by a band of police men, in a cage in the back of a police van, locked in a prison cell until they can get him sectioned again.
    Archie is one of the nicest, most caring people I have ever met. But he is bipolar, and sometimes he is very difficult to be around, very paranoid, very loud, very dangerous. He breaks my heart.

  11. Anon says:

    THANK YOU THANK YOU THANK YOU THANK YOU FOR SAYING THIS.

  12. Ah, the arrogance of self-proclaimed ‘experts’. I didn’t know anything about this in your field. In education, however, the non-teacher ‘expert’ has gone to school and therefore knows how teaching should be done.

    “If schools only ran like they did when [the ‘expert’] was a kid…..”

    My response, “The president would be making speeches about how the US needs more education funding, a country devastated that Sputnik launched and the Russians beat us to space.”

    Have you had a chance to watch the new Sorkin series called “The Newsroom”. I love how the main character cuts through the illogical platitudes that seem to garner such a following.

  13. Anne Wade says:

    I want to establish ‘No discussion about us without us’ on a par with ‘No decision about us without us’. Anyone. Anyone who is being discussed should be allowed in the case conference for the whole time. Their let-out at the moment is that it might be damaging to your mental health to hear the depressing things the professionals think about you. And they would not be able to talk as honestly if you were listening because it would damage the therapeutic relationship. Bullshit. If you can’t be honest, there is no relationship. It would be difficult for professionals to speak to such different audiences as the patient and complacent colleagues simultaneously, and, as one of the professionals, I assert that it would do the professions enormous good to have that discipline imposed on them. It is too easy for them to create their own picture of what is going on if the patient is not allowed in to challenge it.
    I would have no problem saying, for instance, in front of a patient I was caring for, that they should stay in until their manic or depressive symptoms had been sufficiently controlled so that they were no longer a danger to themselves, and they could ask again in 3 weeks or whatever.
    If the treatment was genuinely in their best interests they would probably be grateful by then. The scrutiny would pick up any irritating institutional foibles that were making in patient treatment intolerable for them, and help to force changes.
    As for the morons who think they understand a disorder because they’ve read a good book about it – you used to get the same romantic delusions about the superior insights of schizophrenia and autism in the sixties, and wasn’t it worth price you paid in suffering. No. But such stupidity is not worth wasting anger on.
    Anne

  14. Anne Wade says:

    Sorry, my last sentence sounded like a put-down about your piece, which wasn’t at all what I meant.
    x Anne

  15. I’m way more creative when I’m euthymic. When I’m hypomanic and especially manic all I care about is my appearance, drinking and having sex. Where’s the advantage in that? (except, I suppose that I would procreate at a good rate…but would any child actually survive the mania’s and depressions or the mixed moods? I doubt it). I get distracted easily and don’t want to create stuff…although I have done, but it’s not consistent.

  16. Pingback: Blessed or distressed? Bipolar and creativity | purplepersuasion

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