I struggled a lot over what it means to be “sick” and this was a major theme in my journals beginning in the first year and continuing for about a year and half after developing symptoms. Here is an early journal entry, about six months after diagnosis:
When I have a pain-free day, I become more sympathetic with myself and recognize how hard it had been to function on the previous days. On the other hand, when I am going through a string of difficult days, I get really angry when my husband comments on my being “sick.” I don’t want to be thought of as being sick!
It is interesting that I am having a difficult time writing “my pain,” preferring to talk about “the pain.” Maybe I don’t ever want to accept “the pain” as being “my pain.” It feels like talking about “my pain” would mean that I have taken on the “sick role.” I refuse! (9/04)
I had a vague understanding of what the “sick role” meant but finding articles that explained it in depth started me thinking about how to better understand my struggle. I was struggling to understand what it meant to be sick while at the same time maintaining a “non-sick” relationship with my family, work, friendships, and community, and especially what it means to my sense of self and self-worth. The concept of the sick role was developed as a way to understand the different expectations that society has of people when they become sick. The sick role was written to explain how people deal with acute illness, those that can be cured, but it helped me understand my struggle as I worked towards acceptance of having a chronic illness.
When a person is sick, according to Parsons, s/he takes on the sick role with the following implications: a) others recognize that the illness is involuntary, that the sick person isn’t responsible for being ill; 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) they are expected to seek competent help and to cooperate in the process of trying to get well. You can recognize how the sick role works for you if you think about a time when you have been sick – even as a child. When I had my tonsils out as a nine year old I got to eat all the popsicles I wanted and didn’t have to go to school when all the other kids did, but I also couldn’t go out to play, had to stay on the couch all day to rest, and had to return to school as soon as I was well.
When my symptoms of Fibromyalgia began and for a period of time after I was diagnosed, having the status of being sick worked very well for me and helped me to do what I needed to do. I was able to take time off work for doctor’s appointments and testing, people were willing to cover work and home responsibilities, and they understood if I cancelled social engagements. As time went on (six, eight, twelve, eighteen months) and it began to sink in that I was living with a chronic condition, I began to have strong emotional reactions and mental conflict over being sick and taking on the sick role. Although there were still times when I needed to use the “privileges” of being sick, I also got angry when people referred to me as being sick and I became frustrated with having to rely on medical care to keep me functioning.
The sick role that applies to people who have acute illnesses seemed very different than what I needed when I knew I was going to be sick forever. I questioned what the sick role meant for my self-identity and self-esteem. I also questioned how to balance being sick with maintaining the highest level of functioning possible so I could once again enjoy the life I felt I had lost. What would it mean for my sense of self and my life if I were to accept that I was sick and allow myself the benefits of the sick role?
In future posts I will share my thoughts and reactions to each of the characteristics of the sick role.
 Parson, T. (1951). The Social System. Toronto, Ontario: Collier-Macmillan Canada, Ltd.
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