In a previous blog, Being Sick & the Sick Role, I shared Parsons’ characteristics of the sick role that included: a) others recognize that the illness is involuntary, that getting sick was not the intention of the person who is sick; b) when people are sick they are exempted from their usual work, family, civic, and other obligations; c) they are expected to not want to be sick and to do what they can to restore their health; and d) are expected to seek competent help and to cooperate in the process of trying to get well.[i]
These characteristics were identified to describe how life is expected to change for people who develop an acute illness and I believe that having a chronic illness leaves us in a very strange position of both needing to use the sick role, but also needing to strongly reject it. In this post I provide my perspective on the aspects of the sick role that involve not wanting to be sick, needing the help of others and working with the medical community to restore our health.
The first, not wanting to be sick, seems self-evident to anyone who doesn’t feel well for whatever reason. I have to admit, in my BS days (Before Sickness), there could have been a few days when I wished I was sick so I didn’t have to go to work, or exaggerated a cold so I could stay home. But I don’t want to be sick to the point that I have to give up being productive. I don’t want to play hooky from life. Especially not forever.
Our culture values independence over dependency (especially for men) and achievement through work, especially paid work. But even in family relationships it is expected that everyone will pull their own weight based on age and ability. When we become sick, the sick role allows us to become dependent on others and exempt from work and social responsibilities for the duration of the sickness without being judged – but we do have the obligation to work towards getting well and returning to prior responsibilities (Kassebaum & Baumann, 1965).[ii]
The sick role has the expectation that we will seek medical help so we can be treated, get well and return to our normal routines. This is where a chronic illness is much different than an acute illness. I had always gone to a doctor expecting to receive a cure or assurance that I would get better if I just rode it out. With a diagnosis that means chronic, I wrestled with what it meant to be dependent on medical help in a new way:
I don’t know how to deal with the symptoms without my doctor but also fear becoming dependent. I know this is irrational because when I feel good, I have no desire to sit in a doctor’s office. I think I can trust myself to know how to let my doctor help me while I learn how to manage my symptoms on my own. I also keep telling myself that I have a very large group of friends who love me as a “well person” but also acknowledge what I am experiencing. I spend time with them doing fun things and getting my needs met so I don’t have to depend on being sick to get attention.
I was also wrestling with whether my constant need for my doctor’s help was turning into a need to be sick. I had never been a big fan of doctors and had only needed to see one a couple of times a year at most but when I was in so much pain and was so fatigued, having a doctor help me, take care of me, felt very good. I had to keep reminding myself that I didn’t want to be sick, but I did need help in finding treatments that would help me regain my functioning. If you are reading this I can believe that you don’t want to be sick either.
The biggest challenge for me has been to figure out how to be functional with a body that is dysfunctional. How could I be sick forever and have a normal life? That was a hard sentence to write because it means that I will never be able to assume my prior responsibilities. I needed to figure out, and continue to re-figure, how to live with greater dependency, how to be content with new goals for achievement and work, and how to be content with a different level of involvement in the activity of family.
This is why I believe that the concept of “striving for wellness” at the same time as we are coping with the symptoms of chronic illness is very helpful. Here is how I described this sense of wellness in my journal a little over a year ago:
Nola Pender[iii] proposed that levels of health exist along a continuum and interact with the experience of illness. And here is the interesting part for me: “Whatever the illness experience, the individual continues on a quest for health – a developmental process… Through this developmental process, it is possible for a subjective state of good health to emerge in the presence of overt illness or disability.” Boy this makes a lot of sense to me when learning to live with a chronic illness. The authors have put into words what I have experienced. Even though I am very aware (when I think about it) that I have fibromyalgia because symptoms don’t ever seem to totally go away, I still am experiencing a subjective state of good health. How cool is that!
This sense of wellness didn’t come quickly or easily – and I didn’t always do it gracefully. I fought and I grieved and I fought some more because I refused to be sick and I didn’t want to admit that I had to give up pieces of my life. Eight years later I know my body doesn’t work right (I’m sick?) and I’ve made a lot of changes – I’ve settled into a new normal that feels like a sense of wellness. The new doctor I’m seeing has as the first question on his intake form, “Are you in good health?” I circled yes.
In future posts I’ll share how my life is different but fulfilling – and try to explain how it happened.
I would love to hear your thoughts on how you have found a sense of wellness, or wholeness, while coping with a chronic illness or chronic pain. Or maybe for you it just doesn’t seem possible – I would like to hear about that too.
[i] Parson, T. (1951). The Social System. Toronto, Ontario: Collier-Macmillan Canada, Ltd.
[ii] Kassebaum, G. G., & Baumann, B. O. (1965). Dimensions of the Sick Role in Chronic Illness. Journal of Health and Human Behavior, 16-27.
[iii] Pender, N. J., Murdaugh, C. L., & Parsons, M. A. (2002). Health Promotion in Nursing Practice. Upper Saddle River, NJ: Prentice Hall.