This little book is all about being ill, but not in the medical sense of the word. I donāt describe my illness the way doctors do. Itās also not about what the doctors and nurses did to me; itās not about operations and treatments. Itās about what illness did to my everyday existence, and especially about what I, and the people who live with me, did with me and my illness. What that essentially meant was āworkā: ordinary work. 1 āSickness workā made my illness an ordinary illness.
Using the term āworkā to apply to what sick people do when they are ill is taken from the publications of Anselm Strauss and his fellow researchers. They, of all medical sociologists, have been the most persistent in focusing attention on the complex and comprehensive work that such sick people undertake in order to make their illness livable. Their basic premise was the assertion that illness is not just āexperienced.ā More importantly, it is something to be āmanaged.ā
As a medical sociologist, I knew the social dimensions of getting ill and being ill, as well as the treatment of illness. But as it turned out there was a great deal I did not know. I soon discovered that medical sociology is just as dominated by the medical world as care of the sick is. The doctors and nurses appeared to know a great deal about illness and medicine, but they knew much less about āeveryday illnessā and the āeverydayā aspects of living with illness, and medical sociologists donāt know much more. The medical bias of both these groups causes them to suffer from what Robert Merton calls ātrained incapacity,ā an acquired inability to see what sick people are up against every day.
After being in the hospital for less than a day I saw how much medical sociologists tend to overlook. Medical sociology is mainly about doctors, while most of my contacts were with nurses. Medical sociology is mainly about interactions between doctors and patients, but when I was in the hospital what I heard and saw was that my doctors didnāt talk to me as much as they talked with others about me. Sometimes that happened right outside my door, in conversations with nurses and ward physicians. I heard things they didnāt tell me later on, and if they did tell me, it was often something slightly different. Sometimes I heard that they had talked with fellow specialists, but inpatient consultations, which are even further removed. I heard nothing about these meetings, or a brief summary at the most. Sometimes I saw two or three standing nearby and mumbling to each other, sometimes behind glass walls. Sometimes one of them might notify me of findings or plans. Sometimes I heard casual discussions casually taking place between doctors. But most of all I saw knowing glances, those interactions that sociologists cannot capture with their tape recorders. And medical sociologists seem to know nothing at all about nurses: The nurses who look over at you during a consultation and later say, āThat was typical Doctor A,ā or āThat seems a little too soon to me; letās wait and do it tomorrow.ā I can only guess what their reasons are, reasons they donāt usually express in the presence of doctors. But later on I saw and heard what they did. And then there are the interactions with countless other hospital staff: Research doctors, nameless laboratory technicians, dieticians, the laboratory researchers who take and study blood samples, roommates and their visitors.
I also saw what it is that influences treatment: The essentials and the side issues, the specialisms and whatever falls outside it, the focus on success and the avoidance of failure, the chance of prestige if the treatment is successful, and the difference between the disease and related incidents, such as infections.
Only a little of what I heard and saw was recognizable from my work as a medical sociologist. I noticed that some doctors did things one way and some of them another, that there were doctors who talked and doctors who were silent, that some appealed to experience and intuition and others to test results, that some had more authority than others, that some nurses took me in hand and others kept their distance, that some of them were more focused on the machines and others on my body and others on me, and some on all three, one after another, or even all three at the same time. I saw some of them much more than others, and a few I never saw again. And mainly I saw how much information ended up on my hospital chart without anyone having asked me any questions.
What I saw was everyday health care. And what I and the people around me later did was everyday health care. I saw myself monkeying around with things that I had never been interested in before: The machines and tubes attached to my body. And I qualified what many of the people around me were doing to me as āsickness work.ā I saw sickness work as mainly the occupation of my wife Mar and myself. She organized and I tinkered, as if that was our ultimate passion. We had no choice. There was no avoiding it.
When sociologists study the care of the sick, theyāre mainly thinking about others. That fits right in with the healthcare culture in which we live. Care is something that somebody else does. We may hear more and more about āself-care,ā but that takes place outside the healthcare realm. Only recently has self-care been brought to public attention, mainly through the writings of the sick themselves.
But sickness work is not practiced by the sick alone. When sickness struck, my wife and I had to figure out what was going on. What kind of illness was it? How far advanced? How virulent? And: who is a good surgeon? And later: where is the illness going to take us?
And even later, in the hospital: what are our chances? Who knows what? But also: how do I get through the night? What medicines help? What do I respond to badly? What shots would be catastrophic for me? And how can I get them discontinued? What pills put me to sleep? What should I tell the doctors? And what do I keep to myself? How do we find out what we want to know? Whom should we tackle with our questions: The ward physician, a nurse, my surgeon, or none of the above? One of their colleagues perhaps? How are you to interpret their faces? What are they really saying if they refuse to talk about something? Can you ask the nurses what you havenāt asked the doctors? How do you lie in bed without pain? But equally important were the questions about ourānewāeveryday life. What do we need to learn in order to live with the illness? How do we get through the day, and the night? How do we become accustomed to the effects of the illness? How do we conceal the vestiges of the surgical procedures? How do we learn to live with the impediments that the illness saddles us with? All these were things that Mar and I had to figure out. We learned to manage the situation as circumstances required.
This didnāt change when I was released from the hospital. In fact it only intensified. Mar and I had to learn how to deal with the illness and come to an understanding, not only with the illness but also with each other, Mar with me and I with her, us with my children and they with us, us with my family, with people at work, and with anyone who showed an interest. Thatās what this book is about: This ordinary, everyday sickness work.
Sickness work is not the work of professionals. The sick people collective is on its own, and its members have to figure things out for themselves. They have to because there is very little official care for everyday sickness. There are homecare programs, but most of them are only available when thereās something officially wrong with your body, something that has a name, preferably a medical name. Those who advocate home careāmostly as a way of saving moneyāalso talk about āvoluntary home careā when appropriate, by which they usually mean the partner and the children. The main problem for the architects of a voluntary homecare policy is that more and more people donāt have partners to turn to. And even if they do, the homecare advocates donāt seem to realize that often the partner simply cannot be thereābecause he or she works, for example, or because they have their own commitments, their own lives to manage.
Often the sick person and his or her partnerāif they have oneāare alone in the day-to-day necessity of grappling with the illness that has confronted them. And after a while they know better than anyone else what their problems are and how to cope with them. In addition, these problems often occur at times when official healthcare workers are unavailable (read: asleep), or they occur in places where healthcare workers donāt go, such as bathrooms or bedrooms. Simply by doing this everyday sickness work, the sick person and his partner become more adept than official healthcare workers ever could be.
The paradox of being ill is that sick people become dependent on others and at the same time are thrown back on themselves. I could not have managed without the help of other people. If I had been alone, I never would have come through my illness alive. But without myself I couldnāt have managed either.
Sickness seems to bring out the best in people. Right from the first day, an army of doctors and nurses snapped to attention, detailed examinations were performed on me and incisions were expertly made, IV drips were put in place on my body, sandwiches were made for me, and my pillows were fluffed. But an army of homecare personnel was also working nonstop: Friends were informed, a bed was brought in, I was cheered up, I was fed, Mar organized her life around mine. That was all the work of other people.
I did very little, especially in the beginning. What I mainly tried to do was not to become a burden to everyone else, but even that w...