Mental health diagnosis: relief or millstone?

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A fter my last blog entry, one of my good friends commented, “I reckon you should say whether you mean losing friends before or after diagnosis. Now you’ve got a diagnosis, it explains why you were a bit random and crazy before.”

Fair point. I would imagine there’s something very different about seeing a friend’s ‘random and crazy’ behaviour pre-mental health diagnosis and thinking, ‘Whoa – now that’s odd!’ (and possibly even dissociating yourself from them) and seeing it afterwards and thinking, ‘Ah, now that makes sense!’

I can see how different these two states must appear to the outside world. Believe me, they’re different from the inside, too. For some people like me, the ill-health that pre-dates diagnosis and the wellness that hopefully comes afterwards (or is, at least, given a fighting chance) makes these two states like two rival continents – Sahara versus Arctic, east meets west, random versus stable, desperation versus hope.

For me, finding out what was wrong was a phenomenal relief. I was wrung out from years of my thoughts being refracted through a black prism of hopelessness. Diagnosis, hand-in-hand with being told ‘You’ll feel better within weeks’, completely changed my world for the better.

Immediately after diagnosis, my friend and I sat in a cafe and cried together, saying stuff about it feeling like the first day of the rest of my life and really meaning it. The enduring feeling of that moment is why I feel it’s such a tragedy that people with mental health conditions often take so long to get a proper diagnosis.

Take bipolar as one example. A 2012 study by Bipolar UK and the Royal College of Psychiatrists found that people with bipolar disorder wait an average of 13.2 years before they are diagnosed and often spend years receiving treatment for other conditions (such as unipolar depression – a totally different beast that requires totally different treatment).

I keep thinking, ‘Imagine if it took 13.2 years to get diagnosed with heart disease, stroke or even cancer?’ Delays may inevitably occur, but would it ever take 13.2 long years to get there? I’m thinking not. We are taught, through public health campaigns, to check for the warning signs for these big killers, even if it’s only a vague notion (‘Note to self: must check for lumps’). Not so for mental illness. Of any kind.

The tragedy is that mental health conditions can rob people of their lives, too – for example, people with bipolar are 20 times more likely than the general population to commit suicide. So that means that lack of early diagnosis of a condition like bipolar could, in fact, end up killing just as cancer or heart disease might.

A 2007 study reported in The Lancet, No health without mental health, reported associations between depression, anxiety and coronary heart disease. It also found that depression is an independent risk factor for stroke, one of the world’s biggest killers.

In the meantime, for people with a serious mental health condition like bipolar, those 13.2 years without the correct diagnosis and treatment can be a chaotic living hell with ever-accumulating health and socio-economic consequences.

The thing is, diagnosis isn’t always the straightforward process we might hope it would be and I can see why. As a patient, this is how it seems to me:

Firstly, physical symptoms of a mental health condition like severe depression might easily be seen as physical ailments on their own (such as stomach pains or headaches) and treated as such. ‘I’ve got tummy pains’ may prompt blood tests, x-rays, ultrasound scans or barium meals, and still nothing shows up. Asking ‘How are you actually feeling in yourself? Is there anything else going on?’ as an opening gambit may get to the heart of the matter a little quicker.

The second thing is that in training, doctors are taught that ‘common things are common’, so it will be common for doctors to see lots of patients who are a bit low and anxious and who will find their mood is soon restored to normal with little intervention. It will be less common for them to see someone who has something seriously wrong with them (Mind statistics show that depression with anxiety is experienced by around 10 per cent of people in England whereas the figure for bipolar is only 1 per cent and schizophrenia 0.5 per cent).

Thirdly, I know from personal experience that life events may mask the seriousness of what is really going on. If life is throwing all manner of challenging things your way, like divorce, bereavement or becoming a new parent, it’s not surprising that a doctor may be inclined to say to you, ‘No wonder you’re stressed!’ and give you some antidepressants (which you probably won’t take – ‘What? Me?! No way!!’) to help you whilst you’re in the eye of the storm.

My experience is that it took me the 13 years Bipolar UK discovered in their research to get to my diagnosis of mixed affective state (a hair-pullingly horrid type of bipolar). I don’t blame anyone for this – points one to three as I’ve mentioned above can easily be applied to me.

Over the years, I had physical symptoms that could have been viewed as something else and emotional symptoms that pointed towards ‘a bit of depression’ (I may also have under-explained just how bad I was feeling at times) plus life threw some big grenades my way.

I believe that the grenades, lobbed indiscriminately one after another, were both a cause of my growing ill-health and a smokescreen for what was really going on. My diagnosis finally came when, after Googling like crazy, I said to my GP, ‘I think I have bipolar. I need to see a specialist – please!!!’ (luckily, my pop diagnosis turned out to be right).

So I can see why diagnosis isn’t always an easy thing to achieve. And even when it is, it isn’t always the ‘coming home’ event, the panacea, you might hope it would be. For some people, it may still be the wrong diagnosis, for others it will be a case of hopes dashed when they find their condition is drug-resistant and responds poorly to current treatment options.

But most of all, diagnosis isn’t always welcomed and I expect that most people find it shocking (I was relieved but it was still a shock), a real millstone round their necks, adding insult to injury, a real ‘Oh dammit, like how I’m feeling wasn’t already bad enough!’ moment. I understand that what came as a relief to me might, for other people, feel utterly devastating. I appreciate I’m probably one of the lucky ones.

In a recent article for BBC News, Professor Peter Kinderman, head of the Institute of Psychology, Health and Society at the University of Liverpool, worries about us racing headlong into diagnosis.

He says that rather than labels and medication (which, he argues, have significant side-effects and are poorly supported by evidence of them working), people need “help and understanding”. And he worries that we rely too much on the current “diagnosis-and-treatment approach” (‘Yup, you’ve definitely got OCD – here are some antidepressants’) rather than maybe looking at the “social and psychological causes of distress” (‘Ah, so your OCD started after your friend passed away’).

I understand this anxiety about ‘over-diagnosing’. I’m sure that ‘social and psychological’ reasons may at times be spot-on and non-medical treatment exactly the right way forward.

Not only that but we all know labels stick and can have all kinds of ramifications, from the potential attitude of bosses, friends and loved-ones through to having to constantly and laboriously field ‘Have you ever been sectioned?’ questions on insurance forms (a reminder that you’ll probably always have an illness, even if you feel well). Going down the social and psychological reasons route may be far less onerous on a patient’s life.

But equally, I think a label, a diagnosis, can be helpful. For years, the grenades, the ‘social and psychological causes of distress’, were what doctors and therapists focused on with me, rather than perhaps venturing further into the medical or biological side of things, and I truly believe that’s why it took 13 years to get a proper diagnosis. My theory is I’d felt bad for too long for it simply to be down to grenades alone, devastating though they were.

I understand a diagnosis carries potential stigma and I don’t underestimate that – I’m lucky to live in an environment that enables me to ‘fess up’ about this with little detrimental effect. Others (like people living in the developing world or in underprivileged environments) may not be so fortunate.

But I also believe that diagnosis brings with it explanations, understanding (if only from within) and hope. I’m still not well all the time and am prone to ‘wobbles’ but I’m a hell of a lot better than I was.

Prof Kinderman also talks about the “stigma, discrimination and social exclusion” that can arise from diagnosis of mental illness. Well, as far as I can see, those are external reactions to a person’s diagnosis – in other words, it’s what other people do and say in response to an ill person’s news.

As such, surely the answer is for the person who’s not well to seek a proper diagnosis (ideally, taking into account social, psychological and biological factors) and for people like you, you healthy folk out there, to respond to it with support and positivity.

I reckon that diagnosis is only a problem if other people, ‘normal’ people, make it one. You healthy lot are well-placed to make sure we’re not, as Prof Kinderman describes, stigmatised, discriminated against or socially excluded as a result of mental ill-health. As I’ve mentioned in a previous blog and I’ll say it again, this is why campaigns like Time to Change, promoting greater acceptance of mental health, are so welcomed by people like me.

Diagnosis as relief or millstone? For me it was an immense relief but I can see how external influences can make it feel otherwise. I reckon you healthy bods who can choose to adopt either understanding or prejudice can help to swing it either way.

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Freelance journalist and mental health blogger, based in London UK

3 Responses to “Mental health diagnosis: relief or millstone?” Subscribe

  1. noveliser February 10, 2013 at 11:52 am #

    Fantastic blog. x

  2. jen February 11, 2013 at 8:25 pm #

    x Fab

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