In this post I want to continue with the story of my illness. As I said in the previous post, I really wanted some reassurance. And here is the key aspect of my experience. All the doctors were very keen to tell me they didn’t know what was wrong with me and while, I suppose, I can admire them for their honesty and intellectual integrity, I really hated it. Bloody hell, I hated it. I wanted to know, for goodness sake!
One of the doctors I follow on Twitter who stresses uncertainty is inherent in medical practice is Allen Frances. Doctors don’t always know and it’s OK they don’t know. As medicine pretends to know, Dr Frances insists insists uncertainty is drowned down by medical drum beating. He adds:
Two consequences are obvious. If we can’t figure out the cause of physical symptoms after thorough evaluation, we should admit as much to the patient and figure out the best way of living with the uncertainty and coping with the symptoms. Providing a phoney name for them adds nothing of value and may complicate things further.
In a different post, he says:
One negative side effect of scientific drum beating is the unrealistic expectation (held by doctors and patients alike) that every medical presentation can be accurately diagnosed and effectively treated. When, as so often is the case, this expectation is defeated by the hard reality of our limited knowledge, doctor and patient are both likely to feel grave disappointment and the relationship between them may become uncomfortable and unproductive
Now, as much as I applaud the honesty and feel for the doctors feeling ‘grave disappointment’, I’d rather they focused on me. As they claim the high moral ground of admitting ignorance, it is me who wonders whether what I am experiencing is something that ‘will go away’ or perhaps something that will result in my untimely death (and I do have a few more books planned!). You’re exaggerating and panicking, I hear some of you say. Well, tough. This is actually how I feel, as I write this feeling somewhat worse and hoping that the fourth doctor is right that it is the endgame and I have nothing to worry about (I’ll come back to this reassurance?).
Indeed, there is some literature on experience of medically unexplained symptoms, for example Sarah Nettleton’s paper in which she discusses the anxiety experienced by people who are ill and yet medicine can’t explain it.
Now, I fully understand the position of simply facing the reality of not knowing. The problem is that I understand it as an academic. As a patient I understand it considerably less and have little sympathy with the ignorant medicine. Our expectations clash again. What do we do then? Well, I would like the doctor to be able to communicate with me about the ‘unexplained’. Rather than doctors being vague, tentative, and uncertain, I would like a strategy of discussing the uncertainty.
How to do it? Quite frankly, I don’t know, or perhaps I don’t know yet. I do know, however, that the simple and however honest ‘I don’t know’ doesn’t really work with me and I would like more. I’d consider two possibilities. One is, I would say, not just acknowledging your ignorance, but also acknowledging what it does to me. In other words, as you tell me that you don’t know, how about doing it ‘empathically’? Tell me you understand that your ‘I don’t understand’ is hardly an ideal answer and that it makes me anxious, worried.
The other is situating your uncertainty within the context of your experience and my ‘medical problem’. Does your uncertainty range from ‘will go away’ to ‘I’m dying.’, or does it tend towards one or the other? Also, does ‘I don’t know’ mean – you have no bloody idea and your guess is as good as mine and we might well discuss the possibility of alien infestation, or are my options a bit more limited? In other words, explain to me what your “I don’t know’ means and where it comes from. I’d imagine your not knowing is not simply a blank experession, with eyes clear of any thought. For without all this the ‘You haven’t got anything to worry about.’ is quite an empty reassurance. I need reassurance, I need one I can believe in.
Yes, I know I am a difficult patient. This is because I look at you and see the way you communicate with me. But, I’d hope that it is through difficult sods like me that you can improve your skills. And I will accept your espousing of uncertainty only when you must find ways in which to communicate it with me.