Misdiagnosis in psychiatry: Where do we go from here?

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A nyone who blogs will tell you the key is to keep it short. OK, failed on that one. On a regular basis, as it goes (unaccustomed as I am to being anything but verbose). You’re also supposed to update often. Failed again. In fact, this may be my biggest blogging fail yet. In a matter of days, it will be exactly a year since I last published a blog on this site. I am, officially, a pretty parlous blogger. But I have an excuse. In a word, rediagnosis. And this has taken me some time a) to get to and b) to get my head around.

Over the years, I’ve read much about the misdiagnosis of mental health conditions. I’ve written about it, too, chiefly about the long, arduous road that people travel in their bid to get a diagnosis that fits. In an earlier blog I talked about how I’d been one of those who typically endure a long 13 years to get the point of a bipolar diagnosis and what a relief it was to finally have arrived there in early 2012. I felt that the diagnosis explained so many things. It was as if I’d spent years looking through boxes, drawers and the top shelves of dusty cupboards for my instruction manual and had finally found it.

But over the past year, I have been starting to question whether that diagnosis was, in fact, the right one. Hence the year-long radio silence.

Since I last posted, I have been rediagnosed with generalized anxiety disorder (GAD). I am deemed to no longer have bipolar affective disorder but chronic anxiety (still debilitating but an entirely different ‘flavour’ and with a different treatment approach). In other words, in 2012, somebody – possibly me – didn’t quite get it right.

What happened? I’m still working it out but in a nutshell, at a time of utter desperation (and being the avaricious reader of medical studies that I am) I self-diagnosed bipolar and put myself forward for an official diagnosis in the first place, convincing my GP that I had it because I couldn’t see what else it might be (she tried to send me away once and would have sent me away again had I not had private health insurance), sought one opinion from a private psychiatrist who diagnosed it with breathtaking speed and only over time realised this didn’t feel like the right fit.

Last year, an NHS psychiatrist worked with me on my hunch that perhaps bipolar wasn’t the correct fit for me and, after around three months of looking at my notes (including how the initial diagnosis was made) and getting to know me, he pronounced that my diagnosis was wrong.

There is so much to write about all of this, not least that psychiatric diagnosis is rarely easy. So much, in fact, that despite my verbosity, I have been having trouble knowing where to start. What does it all mean, moving forward? Where do I go from here? How can I be certain that this one is correct if the last one wasn’t? Can I trust my own ‘hunches’ again? And what does this mean for what I’ve written so far? Bear with me while I work it all out.

In the meantime, here is a conversation I had the other day with psychiatrist and great friend of mentalhealthwise.com Dr Ian Drever about the subject of misdiagnosis in psychiatry.

One more thing…I’m really keen to hear your stories about rediagnosis, so please do get in touch.

Me: I’m interested to know your thoughts on misdiagnosis of bipolar.
Why does it happen? In my case I really think it’s because my anxiety and the its corresponding hypervigilance was seen as mania or hypomania, and the catastrophising and the depression attached to it, again, looked like bipolar.

Dr Drever: I agree – various presentations can look like bipolar. For instance, anxiety, irritability, disrupted sleep and agitation may all look similar to the manic/hypomanic phase of a bipolar illness, and social isolation, withdrawal, low mood may look like the depressive phase of bipolar. So, other illnesses may ‘mimic’ bipolar, and on the other hand, ‘genuine’ bipolar may be misdiagnosed as anxiety, unipolar depression and the like.

Me: Have you had any patients that this has happened to, perhaps being given a diagnosis by someone else then seeing them yourself and thinking, ‘Hang on a minute – this doesn’t seem quite right…’? In my case I went to a bipolar expert and so I guess, as Maslow said, if you have a hammer, everything looks like a nail.

Dr Drever: Ha! Spot on. Yes, someone with a special interest in bipolar will see bipolar everywhere, just like someone with an interest in ADHD seems patients through that lens, or autistic specialists see traits of autism all about…. I, like every other psychiatrist, have been caught out with a bipolar misdiagnosis. The most common tends to be initially diagnosing someone with depression, only to then find out months or years later that the patient has become manic/hypomanic, and it becomes clear that the patient has been bipolar all along, but the ‘high’ pole of the illness hadn’t yet declared itself…

Me: What are the consequences of a misdiagnosis? I have spent a few years with a ‘label’ and now I’m having to do an about turn and work out what the new, revised and updated Martha actually is. It kind of feels like a gain (in a big way) but also a loss because I feel I spent a few years possibly not getting the right treatment (CBT may have been good for managing my anxiety, I guess). I am not complaining, by the way – I know diagnosis is difficult – but just realising that psychiatric diagnosis is often tricky and we can only work with the best information and symptom presentation that we have at any given time.

Dr Drever: As you say, the consequences are coming to terms with an illness, and perhaps shaping one’s life around the illness, which sometimes may go as far as defining one’s identity around the illness, only to later find out that the illness is not actually present. The other huge consequence is that optimal treatment for the illness may not be provided, with a misdiagnosis.

Me: There are critics of the latest DSM [Diagnostic and Statistical Manual of Mental Disorders] who say that bipolar has become ‘trendy’ and that people are being misdiagnosed because bipolar in various new permutations (including bipolar following treatment with SSRIs) is now in the DSM. Is there any validity to this claim?

Dr Drever: Yes, bipolar does seem to be increasingly widely diagnosed, perhaps particularly in North American psychiatry. There are an increasing number of subsets of bipolar disorder recognised …. it’s an evolving field, and an area in which there isn’t yet full consensus throughout the psychiatric profession. The debate will certainly rumble on.

Me: What, if anything, can be done to safeguard against misdiagnosis of psychiatric conditions such as bipolar?

Dr Drever: Sticking meticulously to the diagnostic criteria as set out in ICD/DSM, and perhaps also seeking a second opinion at times?

Me: How can patients manage in the aftermath of a rediagnosis? Does it take some getting used to and if so, what exactly are they getting used to?

Dr Drever: At times, redefining who they are – that’s a big step! It’ll take time, and can come as quite a big shock, even if it’s welcome news. As you say so nicely, you’re now finding out who the ‘new Martha’ is….

Me: Is there anything else to say? This isn’t me kicking the industry, just, I guess, showing how difficult psychiatry must be in terms of diagnosis, but also showing what a journey it can be for patients (and not always a smooth one).

Dr Drever: I suppose that ultimately much of psychiatric diagnosis is about shades of grey, and making decisions about whether someone is on one side of an arbitrary line, or the other. It can be a very tough call to make, especially as psychiatric illness can change and evolve. Ultimately, putting people into tight, identical diagnostic categories, like little Tupperware boxes, is almost impossible, and at times, hugely over-simplistic. With time, psychiatry will probably move away from this ‘categorical’ diagnosis to a much more ‘dimensional’ approach, where people would be placed at certain points on various scales, so that everyone would have a completely individual representation of their illness. This categorical/dimensional debate is a hot topic, and will only grow as we understand the brain better. Some say that DSM5 will be the last diagnostic manual to use a categorical approach. All very interesting – perhaps a good subject for a future blog post?…

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Freelance journalist and mental health blogger, based in London UK

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