I can remember years ago, in my first year of uni (studying nursing) learning about the sick role. We had a lecture on it, then the following week they brought a woman in to talk about her experience of Epstein Barr, as a demonstration of someone not fitting in to the sick role.
At the time I felt really sorry for her, I remember thinking how awful it must have been for her. Looking back I consider her lucky, she was sick for a relatively short period of time in comparison to other people with chronic illness. I know people going on 10 years with CFS, in comparison this lady’s experience was much like getting a common cold.
It remains possible to be positive, to think of your future, when you are sick for a limited period of time. When it gets past a few years and the sickness remains, it is hard to remain positive, and even harder to consider a future without illness.
So how do we cope with being sick and not in the sick role? On the most part I would say not all that well.
What is the sick role? Basically its the role we are meant to fill when we are sick, we are expected to rest, sleep alot, watch movies, and make genuine attempts to recover. In return society supports us, allows us time off work, our families might prepare food for us, and help us with our needs. But what happens when its years…
Work might be supportive for a while, but eventually it might all get a bit much and they no longer support you needing time off. For me this did take a while to happen, eventually I became too unreliable, if I didn’t quit it was hinted that I would be fired.
Family may continue to be supportive, or they may stop supporting you at all. They might even stop believing you. My family has been very supportive, but I no longer am able to be in the sick role, I get help, but its help getting to appointments, not help cleaning the bathroom, or cooking dinner.
Society no longer supports us, its been too long. Can we prove whats wrong with us? If we can we might get government assistance, if not we might be left having to try and earn an income when we are not physcially fit to do so. I gave up on this assistance, originally I had no official diagnosis so could not get assistance, now I am just not eligible…but I remain poor.
Then the most important person’s expectations change, your own. Even if we were completely supported in this role, would we want to stay in it? How many books, movies, and bad day time television can we endure before insanity sets in? Eventually we have to learn to carry on with life, adapt somehow, learn to live with the illness.
Kebbster
I’m going on 19 years with CFIDS. Medically I have no problems meeting the requirements for government aid due to the extent of my disability, but because of that very disability, I have never been able to be in the work force long enough to gain enough Social Security “quarters” to be eligable for such assistance. Too sick to work so I can’t pay into the system that’s supposed to be there to help people like me who are too sick to work – catch 22.
I am very blessed with a supportive family, still after over half a lifetime of dependancy, but I strive to avoid “the sick role” every day it’s possible. There are days, even weeks or sometimes months at a time, where my children and home are primarily cared for by my husband, my parents and/or my in-laws while my body gives me no choice but to remain in bed. But I cannot play the part of a victum or I would go insain, so as you say, most days I learn to adapt and carry on as “normally” as I know how.
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I was thinking about this … society has a “sick role” for those who are acutely ill.
What society doesn’t have – at least the first world western society I’m accustomed to here in Australia – is a “chronic illness role”… there’s a role for clear-cut disability like a spinal cord injury or stroke (you soldier on bravely and eventually with wheelchair or bit of assistive technology you basically function like a healthy person and then you’re required to be “inspirational”), there’s a role for terminal illness if you’ll hurry up and die in a reasonable amount of time (see “Tuesdays With Morrie” for ideal behavior in this situation), there’s sort-of a role for long-term-but-getting-better illness (it’s tolerated, but only just). In a way, there’s even a role for long-term illness which has a promise of eventual recovery – such as somebody on kidney dialysis awaiting transplant (you have to suffer without ever grumbling and keep smiling and always be positive). But all of these situations have fairly well defined “endings” which will happen within a few years.
There’s really no place for those of us “blessed” with chronic illnesses with the lovely symptoms like fluctuating illness levels and no known prognosis.
Hmm.
r
Look at this very website, for example. “The Recovery Room”. Where’s the space for chronically ill people who have little or no chance of recovery? The one which doesn’t pressure you (implicitly or explicitly) to believe that you’ll get well in the end, however unlikely that is?
Thanks for commenting Jennifer, 19 years is a long time. Its great that you don’t play the role of the victim, I think feeling that way can make it seem as if we are out of control and cannot still lead good lives.
Ricky, thanks for commenting. Some very interesting comments, it is true that there is no place for those with long term chronic illness who aren’t able to recovery, its what makes it so frustrating and difficult to deal with. Its this that makes me feel as if there is a serious lack of support available for such a group, and often misunderstanding even by health professionals.
The Recovery Room is my creation, I certainly never intended for it to pressure anyone, it is interesting that you say that, not something I ever considered when I made it. Was just trying to make a positive and informative space, I got a little tired of all the chronic illness sites that were frankly fairly negative. I used recovery room not really with the intention of implying that you should or can recover, was a play on the real recovery room, where many of us have probably spent a bit of time. It was intended to convey a ‘healing’ space, but it was intended to be emotional healing, and the information is targeted at symptom management, not cures.
Wow thank you Kebbster for sharing this very illuminating concept of the sick role. I have relatives that abuse that and it makes me frustrated because there are people such as yourself that really have problems. I am my mothers caregiver and it makes me feel good to know I am not being mean when I want her to do things that she can do. She has been in the sick role so long that it is a life change now that she is doing so much better. Thank you God. Anyway Ricky B. I am so sorry for your loss of good health. I pray that there will be some succor or saving grace that comes and puts a balm on your anguish. That someone cradles you and calms your fears. I hope that you can find expression here to help you.
grace and peace
sunny