Stories of illness

I’ve wondered recently why we, as doctors and other health professionals, choose to tell our own stories of illness. You would think that we would want to swerve away from all such things, faced as we are with illness and suffering, often on a daily basis. But not only do these stories continue to be written, but people continue to read them. I don’t know why this should be, but as a writer and reader I can speculate a little.

The writing is perhaps more easy to understand. As humans we continually strive to tell our stories, in whatever way we can. This doesn’t have to be with words; some will use art or music, but everything we tell comes from our lives. And when something bad or difficult happens, we often tell it to ourselves, over and over, to try to understand it. If we can, we may try to tell it to others, as our story and our interpretation of what happened to us. Illness, to ourselves or others, is ultimately one of the most frightening things that can happen, with its whisper of death and the unknown.

I wrote about my mental illness many years after it first struck, but strangely not at a time of peak confidence and recovery. Rather, I had just experienced a further episode of depression treated with ECT. I had managed to rebuild my life and family after the initial period, but that had taken all my energy and previous attempts at writing had come to nothing. But now, when I started to write, I found that I had so much to say it almost drowned me. For me, it was a chance to speak, but also to reflect on all that had passed, and how it had changed me, both as doctor and patient. I didn’t think anyone would want to read it, but for the first time showed my story to friends and family. I suppose I was able to tell them things that I couldn’t have done, any other way. It didn’t matter whether it was the ‘right’ version of events – it was mine. And others reading it was quite transformational for me.

The thing about mental illness, for me, anyway, was the shame, and the fear that I would be unable to get back to a normal life and work. I felt I had failed. I have spoken to many others since, and I don’t think I’m alone. When I first started writing, people called me brave, which rather embarrassed me. I was sharing my experience of an illness, and if that was brave, then maybe it was my fault? Did people expect me to be ashamed? Should I be ashamed?

The truth is that my views on mental illness are constantly changing, and writing helps me think things through. Sometimes it will be interesting, and sometimes less so – the narcissistic viewpoint gets me through this, however.

Those who write about their experiences of severe physical illness may have different reasons for doing so, but it is often striking, reading their work, how they, too, search for explanations and meaning about what has happened to them. There is something about having a clear pathological diagnosis that may even be envied at times by those with mental illness; there are differences, of course. But recovery is not guaranteed from either, and there the stories merge.

More curiously, why do we read these stories, written by doctors and others, about their own illnesses, their struggles with the system and with treatment, their interactions with caregivers? I think it comes back to their role in people’s minds – that of the healer, who somehow ought to be immune to illness. If even they are struck down, then how did they manage? How did they beat it? It can also be soothing to read others’ stories when you are faced with a similar situation, and can bring hope, and a glimpse of a possible future.

There may also be the shiver of fear, the relief that this has not happened to you – ‘There, but by the grace of god, go I’. If you are already fearful, you may be able to reassure yourself. I find that it can feel almost voyeuristic reading about the sorrows and fears of others, but then comfort myself that they want it to be read. These stories also tell us more about illness and mortality, that, in previous centuries, might have been our day-to-day fare. Many people have never seen anyone die, and much serious illness happens now in hospital. Maybe it is good to try to understand the normality of illness and death.

I mostly read about mental illness and addiction, and, as a doctor, I see it more and more as a vital part of training. I used to recommend articles and books about lived experience to trainees, but with some slight embarrassment. Now I tell them that these are as important as the textbooks. You learn a lot over the years by talking to patients; but these narratives deliberately explore many of the difficult issues, not least around the relationship between doctor and patient.

There are some interesting differences between addiction and mental health, bearing in mind they can overlap. Addiction narratives often present a classic arc of increasing use and consequences, followed by a turning point and a period of recovery, and sometimes lapses. Mental illness is sometimes more nebulous – there isn’t always such a clear identifiable factor like drugs or alcohol, and it may be more ongoing. Neither of these are mutually exclusive, but there is often a feeling of redemption in addictions that is not present in mental illness. Those with addictions often take more personal responsibility, and I find this difficult. No-one should be blamed for their addiction or mental illness; but what if this actually helps to overcome it? Maybe it is about empowering people without criticising or belittling them. Responsibility may not be achievable, but telling one’s story, and listening to those of others, is a way to try to understand.