At a recent mental health event I heard a service user complain, “it seems like you can’t get any treatment on the NHS until you’ve got a diagnosis!”
I’ve now been thinking about this for week, and I’m sorry, but … what exactly is so wrong with that? Would you trust a doctor whose approach is to get you started on a treatment programme, and then decide what’s wrong with you? I’d have a serious problem with, say, a gynaecologist whose basic approach to patients was, “I have no idea what’s wrong with your ladyparts, but don’t worry – I’m going to give that some serious thought at some point after I’ve whipped your uterus out!”
A diagnosis is just a working hypothesis about what might be wrong with someone, a theory about what’s wrong and (perhaps) why. From this theory flows a range of possible treatment options. The art of diagnosis in mental health is probably murkier and more complex than in most physical health conditions, but many bodily ailments also have a range of differential diagnoses based on clinical the interpretation of a cluster of symptoms. If you present to A&E with excruciating abdominal pain, the diagnostic process – establishing whether you are a surgical or medical case, have a new disorder or are in an acute phase of a chronic condition – will determine whether you have an operation or drug treatment, whether the drug treatment is by mouth or IV, and so on.
In both physical and mental health problems, there is potential harm to be done by not giving someone a diagnosis. It took from age 12 until the age of 20 to find anyone willing to pin a diagnosis on me. I’m fully aware of labelling theory, and of course I understand that clinicians might be nervous of giving a young person an identity as “someone with a mental illness”. But not putting me in that category meant that I got very little in terms of any treatment that might have eased my distress. The fact that I survived and gained the qualifications I needed is in spite of the fact that no-one even began to touch the pattern of deep, recurring depressions I experienced (I don’t blame them for not treating the bursts of energy and the grandiose thinking, because I never saw them as a problem). The ironic thing is that the medical profession’s care not to label me as “a depressed person” gave my brain free rein to develop habitual patterns of depressed thinking: 8 years, right at the age at which people’s personality traits are becoming established, of unchallenged “maladaptive coping mechanisms” such as self-blame, fear of failure, guilt, and self-hatred.
It’s certainly true that some diagnostic labels have more baggage attached to them than others. Talking openly about depression and anxiety, for example, has become more common and acceptable in recent years. But there is a continuum of public acceptance, with diagnoses such personality disorders and schizophrenia having a very long way to go before their associated stigma disappears (exacerbated by the fact that few non-sufferers understand what these labels actually mean). But overall, I have found it useful to have diagnostic labels applied to me, and not just because they have helped me access useful treatment.
As far as I’m concerned, a diagnosis is some sort of measure that I’m not just making it up. There is something wrong with me, in the eyes of a specialist clinician. My partner finds it very funny that I could have had any doubt that I really haven’t been well this year, but part of me holds a belief that I should just be able to get on with things and that if I can’t, this is evidence of some sort of character weakness. My diagnosis reminds me that I am not being a malingerer or making it all up, and therefore helps me to be kinder to myself.
Secondly, getting re-diagnosed with bipolar allowed me to seek out information on the internet and read up on the experience of other people with the same diagnosis, and this really helped me to contextualise some of the very strange experiences I’d been having. To find out that hypersensitivity to sound, taste and colour, while not exactly normal, is quite common for people experiencing a bipolar high was very comforting. Discovering that disturbed sleep can be a trigger for many people’s episodes helped me understand why I have in the past become unwell after shift work and after my sleep has been repeatedly disturbed by noisy neighbours. Seeing my symptoms as a manifestation of bipolar, not something that I alone go through, makes me feel less weird and isolated.
Using the bipolar label has also hooked me into an online “bipolar community”. I receive fantastic emotional support from people who’ve been there, who know precisely what I mean when I describe my mood states and the difficulties associated with them. Information is also shared; people suggest websites, articles, or books that they’ve found helpful, and discuss treatment plans and their experiences with medication. If I hadn’t had Twitter friends to advise me how to manage the extreme nausea I was experiencing from lithium, I might have given up on it by now.
Of course, I completely support anyone’s right not to be defined by their diagnostic label. I know there are many people who subscribe to the maxim that “labels are for pickle jars, not people.” Equally, if you have been given a label and it doesn’t feel like the right one for you, you’re not going to rush to embrace it. But I like my current label. I think it fits, I feel much less alone than I did six months ago, and it’s substantially increased my chances of getting treatment that addresses my highs as well as my lows. Like any diagnosis, it’s just a tool, but I think it’s a useful one.