Does it help, having a label or a diagnosis? Maybe it depends what it is, or how it was acquired. As a psychiatrist, I like to make a diagnosis; indeed, it feels sloppy not to try, and there is always the genuine hope that this will lead to better management.
But I don’t do terribly well with my own diagnoses. When I first became ill, many years ago, I was told that I had depression. What, I thought? This feels nothing like depression. I knew the symptoms, but perhaps I didn’t know myself terribly well, and I couldn’t see much connection between the two. I am actually ashamed to admit that not only did I think that I had borderline (emotionally unstable) personality disorder, but I was convinced that everyone else thought so too, particularly those involved in my care. I am ashamed because this highlights my own prejudices and misconceptions.
Later, my psychiatrist told me I had bipolar disorder. Then I changed psychiatrist, and he decided I had recurrent depression (psychotic depression), later changing this back to bipolar disorder. The problem is that if a diagnosis changes, as a patient you start to doubt its validity. You think that it could easily change again, and if so, is it really true? As a psychiatrist, I know the importance of making a diagnosis with care, and reviewing it if things change – but it’s hard to accept as a patient.
I also know that some psychiatrists have a reputation for making particular diagnoses, and this can attract scepticism from colleagues. Bipolar disorder and borderline personality disorder can be diagnosed in the same person by different doctors. All this really proves is that psychiatric diagnoses are very hard to make, but it does bring me back to the thorny issue of personality disorders.
I didn’t want to have a personality disorder because it meant – to me – that I wasn’t ill, that I had brought this on myself, that it was my fault. I don’t think I came up with this all by myself, I think it was and is a stigmatising diagnosis, and I had seen some punitive attitudes. I think things have improved – more people now are sympathetic, but the resource to treat remains limited, and people are still let down. My own fears, that I had this, make me very sad. Fears of judgment and criticism – and is that how I think about others? I really hope not. The years have taught me that those with personality disorders suffer as much, if not more, than those given other diagnoses. They are frequently victims of childhood trauma, and can be angry, and difficult to be with; but they are no less deserving of our help and care, perhaps more. It’s just that our care often isn’t very good, partly because we need support, and resources (money) to provide it, and partly because we don’t always know what is best. Our current knowledge is incomplete.
But I think that it’s the name, personality disorder, that really gets to me. And borderline! Emotionally unstable is slightly better, but not much. When I think about my personality, it’s about what I am and mean – it’s who I am – and having a disorder diagnosed would be profoundly disturbing.
I do think diagnoses are helpful, but we (psychiatrists) have to accept when we get them wrong, and we need to explain this to our patients. And some need better names.
My own (current) diagnosis of bipolar affective disorder is one that I am trying to accept, but it still feels alien to me. I see a textbook description, and I see myself, and I think how can these possibly have any connection? Would manic depression be any better, I wonder, and the answer is probably not (although it is more descriptive).
Ultimately there will always be people who don’t believe in psychiatric illness, or see it more in terms of a psychological construct resulting from the experiences of life, good and bad. What happens to us influences us greatly; but having seen some very ill patients, I cannot believe this entirely. Having been ill myself – I just don’t know. One is too close to oneself to tell.
Is mental illness real? Well, if things can go wrong with the body, they can undoubtedly go wrong with the brain. To me that counts as illness, although there are many other influences. Why does this question of veracity provoke so much emotion? Perhaps because mental illness is frightening, and the thought that one might have no control is fundamental. How can we believe in ourselves as beings if we are subject to biology? I don’t have any answers, but I like to think about it.