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.