I’ve been thinking about fibromyalgia the past few days. Usually I don’t, because I’m occupied with other things. But once again I am feeling the need to do some emotional work. It has been an ongoing task, dealing with the emotions that are triggered by having this chronic condition. I’m feeling good and have been able to be active, but […]
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. […]
I have already posted on Being Sick & the Sick Role that lays the foundation for this series of posts. I also posted on how we don’t choose to be sick, don’t look sick, don’t want to be sick, and how tricky it is to help people understand how we are sick so we can get the help we need without having them treat us like we are sick. You can find that under Who Volunteered Me to be Sick. I have a lot to say about work and chronic illness so I am breaking it down into several posts. When people have an acute illness and take on the sick role, they are exempt from the usual work, family, community, and other obligations while they are sick. When we get pneumonia or the flu, or have surgery, we can take some time off and in fact we are expected to do this to aid in our healing. What does it mean when we have a chronic illness where healing probably won’t happen and remissions may not last long? What does chronic and possibly degenerative mean for our responsibilities to our families, our work both within and outside the home, to our community and church work? We can’t take a few weeks off, or even a few days, to get better because chronic means forever.
In the 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. Parson identified these characteristics to help people understand how life is expected to change for people who have acute illness. 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 very strongly reject it. This blog is about how a chronic illness, especially one that is invisible, can muddy others’ perceptions of whether our illness is involuntary and our intentions. In fact, they can muddy our own perceptions. Susan Wells tells about her experience of trying to get a diagnosis when she was having frightening symptoms and none of the doctors she went to could find anything wrong. She says that she used what little energy she had left after working and taking care of her family to find out what was wrong – which included trying […]
My doctor introduced me to the term “new normal” and it intrigued me – probably because I was well on my journey to finding one. And it was a hard journey, as bumpy and wild as the five-day tour of Kyrgystan in a 4-wheel drive van driven by a guide who had fantasies of being a bronco rider – more about that in future posts. The journey to a new normal was full of doubt, fear, pain, sadness, and anger and it required a major change (not just a shift) in how I thought about myself and my life. It took courage and perseverance; sometimes I wanted to give up but I didn’t know how. Even though I became discouraged at times, I always had a strong drive to find a way of living that had integrity. But what does a new normal consist of? I wrote this in my journal in October 2004, ten months after being diagnosed. For many years I have found strength and direction in the following words by James Baldwin (1961, Nobody Knows my Name, p.100): Any real change implies the breakup of the world as one has always known it, the loss of all that gave one an identity, the end of safety. And at such a moment, unable to see and not daring to imagine what the future will now bring forth, one clings to what one knew, or thought one knew; to what one […]