Thus far, in the process of studying for my preliminary examination (reading 125+ articles and book chapters (and there’s another 50+ to slog through)), I’ve managed to avoid blogging about sociological notions of health and illness… until now…
In an article by Arthur W. Frank, he suggests that we are living in a ‘remission society,’ where patients are “effectively well but could never be considered cured” (163). This conception of illness flies in the face of Talcott Parsons’ notion of the “sick role,” in which the patient has that status for a limited amount of time. In Frank’s ‘remission society,’ the patient is always caught in a void between health and illness.
Further unlike Parsons, the patient, in Frank’s parlance, is seen as an active rather than passive actor. The patient, as a person, rather than relying solely on the medical profession as a means to attaining wellness, is set to the task of defining what illness means for their life, given that their life will be in a permanent state of transition from illness to health, health to illness, back and forth continuously.
Especially for those who become ill at younger ages, ones life is in a constant state of upheaval. Do I make plans for tomorrow or the next day when I don’t know how I’ll feel an hour from now? If I become “well,” will the chronic illness community reject me? If I become sick(er), will I permanently lose my status in the world of the healthy (or in my case, has that already happened)? These are incredibly difficult questions to answer, but Frank’s concept of the ‘remission society’ is useful in seeing how such questions come about in the first place.
During my most recent flare (which was two and a half weeks ago, a record for me!), I got a fever and my glands swelled. While these are typical flare symptoms for many lupus patients, this rarely happens to me. Usually when I flare, I end up with intense pain over my entire body, nausea, dizziness, and a general feeling of being unwell. Not only did my glands swell during the flare, but a week and a half after the flare, they were still swollen and incredibly painful.
So I resigned myself to going to my PCP to get it checked out. Basically, she confirmed my glands are swollen and that I just have to wait it out, that it is probably just some weird autoimmune reaction to something. I was miffed. Not a holding pattern again. I hate having to wait it out; see if it gets better, worse, or I die in the interim (not really, but, you know...). It’s just one of the many wonders of being chronically ill with a set of diseases that are so variable. It’s another not-so-subtle reminder that modern medicine can only do so much…
After working out on Sunday and Thursday, and having two relatively pain-free workouts, I’m feeling encouraged. I don’t think I’ve ever been at the point where I’ve been able to say that I’ve kicked lupus’s ass today (or this week). But it sure feels good to say it (even though I’m not sure what I did to cause it – dumb luck?). That is, with the very big caveat that I know this is likely not a permanent state of affairs.
But I have felt surprisingly good over the past few weeks. Although it seems that if I’m not feeling the lupus drain, I’m getting acutely ill. Already this summer I’ve been sick four times, each time with types of infections that I’ve never had before. This is obviously frustrating…
People, on several occasions now, have asked me why I don’t use the illness card more often to get out of things, because it is a great excuse. If only that made it bearable, if only that made it worth it. But not the best excuse in the world would be worth nausea, dizziness, unending pain, bouts of depression and anxiety, a list of medications longer than my CV…
And this takes me back to Parsons and Frank, because to me, the only people that the sick role is applicable to are those who fake illness to get out of work, school, etc. If you really want to beat a dead horse, I suppose you could say that being acutely ill does allow people, if only unconsciously, to abdicate their social responsibilities for a brief period of time. But for the chronically ill, the sick role simply doesn’t work.
For Parsons, illness is a transitory state in that one becomes ill, evades social responsibility while ill, sees the doctor to get well, and is ushered back into the world of the healthy again. For Frank, illness is a transitory state in that one is constantly negotiating the meaning of illness and health, and ones identity is intrinsically tied up in notions of what it means to be healthy and sick.
To my mind, Parsons’ notion of the sick role is found severely wanting. Frank’s notion of the ‘remission society,’ however, is relevant to me, as my own illness trajectory vacillates. As I’ve said before, I was mistaken that remission would come with flashing lights and confetti, a “coming out” party of sorts. Even with the advances of modern technology, the only empirical evidence of remission is when a battery of lab tests come back normal, or in some cases, normal enough, within the normal range, etc. But these results don’t necessarily match the way the patient feels, physically or emotionally. This makes health seem even more elusive, always just beyond reach.
And inevitably, I think the concept of a ‘remission society’ creates an even greater gulf between those who have been sick and those who haven’t. It’s like we went to different schools together. And obviously, as the explosion of chronic illnesses continues, less and less people will come to be considered “purely” healthy. How will this impact how we deal with each other as “healthy” and “sick,” and more simply, as people?
(Frank, A.W. (2005). “The Remission Society.” in P. Conrad (Ed.) The Sociology of Health and Illness; Critical Perspectives. New York: Worth Publishers, pp. 163-166)
(Parsons, T. (1951). The Social System. New York: Free Press)