I have just run the hot water tap and put my hands underneath it, with the water as hot as I could bear, for as long as I could bear. The water was probably hotter than most people could stand, certainly beyond the temperature to cause pain. That was why I did it. I have been trying to reach the pain threshold in order to ‘crack’ the itch from my eczema.
To its sufferers, eczema is not principally a disease of appearance. It is a disease of itch. The itch is at times intolerable. Only hot water close to boiling point will crack it. Almost everyone with eczema knows this. It is part of the subjective knowledge that binds us as sufferers: a knowledge that lies in a quite different dimension from anything you will ever read in textbooks.
I have had eczema all my life. It is hard to be certain how much of my disposition as an adult is due to eczema and how much to other parts of my inheritance from biology and biography. But it would be odd if it did not have its inner representations in habits of thought, feeling, images and relationships. From what I know of myself, I would say that eczema and the struggle to live with it earlier on in my life have shaped me to a significant degree. Perhaps this is true of everyone who has had significant illness in childhood.
Nowadays my eczema is limited to my hands and is entirely manageable, but as a child I had eczema in many places, including the inside of my elbows, behind my knees and around my ankles. Many of my memories of childhood are memories of disordered skin sensation: the itch itself, the incessant and futile struggles to resist it, the almost erotic release of surrendering to it, and the unbearable tension of trying to scratch enough to relieve the itch without gouging down to the flesh. Often, it was impossible to sustain the tension. I would give way to a frenzy of scratching, often privately in the toilet where no one could see what I was doing. The frenzy would lead in turn to other sensations: the immediate rawness of the newly weeping patches, followed in due course by the downright pain of hardened, stiffened and cracking skin. The rawness was usually accompanied by shame, the stiffness by a kind of despair.
I was born in the days before the steroid ointments like hydrocortisone that are commonly used nowadays, so the memory of the condition itself is mixed with the pungent and sometimes brutal treatments that were in fashion at the time. At night I had cotton gloves tied on to my hands in vain attempts to limit the damage from scratching, and at times my arms were put in cardboard tubes overnight to prevent me getting to my elbows. Later, I was taken to the old skin hospital in the west end of London for radium treatment, until this was found to be a good way of inducing leukaemia.
Like almost every other disease, eczema is an interactional condition as well as an intrinsic one. When my parents fought, which they did a great deal, I would itch and scratch more. My scratching and itching probably exacerbated their bad moods and sense of helplessness as well. Because of its shocking visibility, eczema is a social condition too. At primary school, the only girl I could dance with was a red-haired girl I did not much care for, who was herself afflicted with dry and scaly skin. She had no other choice of partner either. Ironically, I found her skin particularly repulsive because its appearance and texture was not the same as mine.
At least the teachers in that school let me cover some of my worst patches with long trousers. When I started at secondary school, I shivered in grey flannel shorts while other boys stared at my legs and wondered (or so I thought) what terrible diseases they might catch from me. In the swimming pool and on the rugby field, I contrived to keep the backs of my legs out of people’s sight lines as much as I could. Scratching, as always, still went on out of view. Probably very few people noticed the powdering of dry skin flakes on cubicle floors, and almost certainly they would not have known what to make of it.
A few years later, I discovered how to use my understanding of eczema productively. While I was a medical student, I joined together with about fifty other sufferers and parents to establish the National Eczema Society. In time, I sat on its research and scientific committees, and I am now proud to be one of its first honorary life members. At a more mundane level, I also take pride in being able to explain the minutiae of skin care to eczematous patients or their parents. For example, I know how important it is to be meticulous about exactly how to apply moisturisers – on newly washed skin that is still slightly damp. I also know how pointless and infuriating it is to be told ‘Don’t scratch!’ I sometimes advise parents to tell their children ‘Don’t itch!’ If nothing else, the paradoxical injunction may stop people in their tracks and invite them to respect the compulsiveness of the condition.
The corollary of this knowledge is an awareness of how vast my ignorance must be of the subjective experience that lies behind all the diseases that I see at work but have never suffered from myself. At least that ignorance is a handicap I share with every other doctor.