When does illness begin?

In the late spring of 2009 I was diagnosed with hypertension. This means, according to the current version of the International Classification of Diseases (10th edition) that my blood pressure is (regularly?) above 140/90 mmHg. Regardless of the potential arbitrariness of the diagnostic criterion (the treatment criterion in England is actually different), medicine has been able to set a very clear cut-off point beyond which you have primary hypertension (ICD-10 I10). And so, after investing in a blood pressure monitor, I could actually see for myself whether I was ill. Brilliant.Before I go on – there is a blog to be written about taking your blood pressure. My GP told me I was to take it three times, then take the lower of the second and third measurements, and that was the ‘definitive’ readout. Out of interest I actually started experimenting taking my blood pressure 10 times, or 15 times. I don’t think I had two repeating readouts. The question of what was my blood pressure was actually unanswerable? But that’s for another blog.

Anyway, the clarity of 140/90+ mmHg made me ask a question of depression. When does it actually start? And so I asked some psychiatrists and wrote an article about psychiatrists’ accounts of clinical significance in depression.

I was reminded of this when I read Liz O’Riordan’s tweet. Her question is a mirror of mine. While I asked doctors about the starting point of illness (in my case depression), she asks about, shall I say, lived experience of the  beginning. When for me, the patient, does my illness start?

Now, the findings from my study are quite simple. Depression is invoked by a doctor’s fiat. As one of the medics said in response to the question when depression starts:

When the doctor decides.

Gosh, that’s easy, isn’t it? All that despite evidence (quoted in the article) that there is a significant period between a person feeling ‘something is wrong’ and any possible depression. Diagnosis was seen as an authorisation of what a patient might feel. And here came my surprise. Liz O’Riordan’s question was answered predominantly in terms of diagnosis. Diagnosis was the crucial moment for the women responding to the tweet – this was when their cancer began. And so I started wondering why it is so.

The first response came in the brief twitter exchange. Diagnosis closes the space for saying “It’ll be alright.’. I read it as giving the patient experience an ‘official’ dimension. By authorising it, it strips it from any doubt. The fiat of the diagnosis, it seems, pulls lived experience firmly into the medical sphere. There is finality of the diagnosis.

The second point is related. Diagnosis implies a plan, a treatment. Indeed, diagnosis is often invested with notions of professionals jumping to action, bringing efficient treatment leading to speedy recovery. Obviously, it’s way more complicated and diagnosis change/creep are far from uncommon. Yet, socially, diagnosis at least can be therapeutic in this sense (plenty of literature on this).

The third point, I think, is the difference between diagnoses of depression and cancer. The latter is probably invested with much more objectivity on the one hand and seriousness on the other. Cancer diagnosis is also likely to be much more feared than diagnosis of depression, it is much more of ‘bad news’. Or much more of Bury’s biographical disruption. Indeed, the men I interviewed for Men’s Discourses of Depression  hardly ever spoke of their diagnosis or even of anything resembling diagnostic criteria, including ‘depressed mood’. Diagnosis was completely backgrounded in their stories.

Now, all that has consequences. First, I have been interested in psychiatric diagnosis and as the medical model of psychiatry positions it ‘just as diagnosis’, it might not be. In fact, there might not be just ‘medical diagnosis’. Different diagnoses are experienced differently, with different, say, authorising potential, they have different meanings and position in the illness narrative. This is hardly dramatic news, yet, I wonder what (if at all) the medical profession makes of it? What do you, the doctor, do with (potentially very) different points at which different illnesses start?

This also carries interesting consequences for experience of illness. Arthur Kleinman in his book The Illness Narratives distinguishes between three different kinds of being ill. Illness is what we experience (from runny nose to irritation in the case of common cold); disease is what the medical profession treats and records for example in the International Classification of Diseases; finally, sickness is what the society makes of what we are ill of. This classical distinction is pretty well accepted (particularly in social sciences of mental healthcare). Yet, the centrality of diagnosis in the responses to the question of where cancer starts, might actually undermine its clarity, at least in the case of some illnesses/diseases (I actually don’t know how much literature on this there is). And that, in turn, opens significant issues for how we understand illness experience and how medics should approach it.

And all that after jut one tweet. Go figure.



Loading ...