Dodgy diagnoses

Last week I saw a psychiatrist here in Thailand to review my medication and discuss a possible diagnosis of something other than generalised anxiety and depression. As I’ve talked about before, I’m fairly sure that I have a form of OCD known informally as ‘pure-O’, named as such because it seems to lack the obvious compulsions such as hand-washing and lock-checking that OCD sufferers sometimes display. In fact, compulsions do exist but are mostly internalised (counting, reassuring, checking, ruminating, thought-blocking, etc).

Anyway, it seems that this form of OCD is not too well known amongst medical professionals, even psychiatrists. The disorder can take so many forms that it can be tricky for doctors to recognise. As a patient, I find that it is incredibly difficult to really convey in an hour’s appointment (the first ten minutes of which are spent faffing about with paperwork and marking on a scale of 1-10 how your appetite/mood/libido has been in the last week) the weirdness, complexity and speed of my obsessional thoughts and attempts to escape the resulting anxiety, especially when the slippery nature of OCD means that my thoughts are constantly shapeshifting and reappearing in new and terrifying guises like a gigantic, nightmarish game of whack-a-mole in my mind.

So I tried to explain this to the new psychiatrist, who ummed and ahhed and wrote lots of things in his notebook. He was young and clearly intelligent, and listened carefully. I asked him about medications, and he suggested a higher dose of quetiapine (aka Seroquel, an antipsychotic medication that I currently take at a moderate dose). I was surprised and asked him what he thought about a diagnosis. He paused and said ‘schizoaffective disorder’. I paused and burst into tears. Schizoaffective disorder? Schizo? What? Like, like schizophrenia, seeing stuff and hearing voices? Eh?

He gave me a tissue and explained that schizoaffective disorder isn’t really related to schizophrenia (?) and that in my case it manifested as depression with delusional beliefs, and that this was actually good news, because in my case it seems that schizoaffective disorder is episodic and therefore it’s likely that with the right pharmacological intervention it can go into complete remission and I can be symptom-free. He explained that people with psychotic delusions fully believe their thoughts whereas OCD patients know for certain that their thoughts are untrue, but the anxiety is what keeps them stuck in the compulsive loop. He added that I looked too ‘normal’ for an OCD patient because I wasn’t behaving strangely by carrying out bizarre behavioural compulsions. I then spent the rest of the day ruminating about whether my thoughts were in fact true representations of my own desires (and whether I was actually psychotic and therefore unable to tell my arse from my elbow) rather than my thoughts being anxiety-based symptoms of OCD.

I spoke to people with similar experiences, including OCD expert Steven Phillipson, and all of them suggested I get a second opinion, and that psychiatrists often get it wrong because ‘it’s sometimes difficult to diagnose OCD because symptoms can be similar to those of obsessive-compulsive personality disorder, anxiety disorders, depression, schizophrenia or other mental health disorders’ (Mayo Clinic, 2017). Dr Phillipson also pointed out that antipsychotic medications have ‘enough of a sedative effect to calm down a a charging rhinoceros’, so the fact that quetiapine has been somewhat effective for me is not evidence of a psychotic disorder. He added that people with OCD are often unable to say that their thoughts are untrue: after all, if we knew our thoughts were just meaningless brain bollocks, we wouldn’t worry, and then it wouldn’t be an issue to start with, would it?

But what does it matter about a diagnosis, anyway? After all, that which we call a mental health problem by any other name would feel as shit. But I think it does matter. For a start, the treatment (both pharmacological and therapeutic) is different depending on your diagnosis, so getting it right could mean the difference between harmful/time-wasting or life-saving interventions. People spend extortionate amounts of money and time on ineffective therapy. This is perhaps especially true with OCD, which can mimic so many other mental health disorders yet only responds to certain meds and a specific type of cognitive behavioural therapy called ERP.

So, I don’t know what to make of all this, really. I know I have OCD symptoms and behaviour, and whether there’s something else going on as well doesn’t change this. Maybe it comes back to that cliché about mental health: that it really is a spectrum, or spectrums (spectra?) and nobody (unless you’re the Buddha, or dead) is completely free from mental or emotional suffering. On an emotional level, I think we all have delusional beliefs: that we are definitely not going to die tomorrow, for example. Or that our boss thinks we’re difficult. That so-and-so doesn’t like us. That we aren’t attractive enough. Whatever it is. You can ‘feel’ that these things are true whilst being aware on a rational level that they probably aren’t. I don’t see the difference with my thoughts, except that mine are rather more drastic and extreme, and cause debilitating levels of fear.

All I can really do is carry on with the ERP, mindfulness, exercise and think about upping my medication. I’m not convinced, though, that more quetiapine will get rid of my thoughts once and for all without me turning into a zombie or stopping any brain activity altogether, so I’m not going to do anything for the moment other than continue to search for an ERP specialist, carry on with the above and hope that in the meantime I don’t start believing I’m the Virgin Mary or something.

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