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. […]
So often I hear that people go to doctors and the doctors don’t take their pain seriously. I also know that most doctors are afraid of prescribing narcotic pain medications for people who have fibromyalgia. As I have been looking for a new doctor, one that I went to said that he would be willing to work with me to keep symptoms controlled but he doesn’t prescribe narcotics for people with FM. Here is a link to an interesting article by a doctor who experienced chronic pain after a car accident. His experience with other doctors led him to change how he practiced medicine. http://www.webmd.com/pain-management/features/pain-doctor-chronic-pain-patient Related articles Is chronic pain in the brain? (blogs.abc.net.au) Doctors petition FDA to change labeling of painkillers (sacbee.com)
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.
When I developed my chronic condition the first thing that happened to my life was that I started spending a lot more time in my doctor’s office. So much time that I thought I should be collecting frequent flyer points towards a free office visit. Or I should be given my own examining room with a recliner, a stereo system, and wet bar – and stocked with my favorite magazines. The nurses kept telling me they were working on it in the basement. What I received was a lot of time to read novels while I waited and time to think about this relationship that was forming. Through these frequent visits we learned how to work together and formed an excellent working partnership. In a series of posts I will be sharing with you what I believe made our relationship work so well and especially what it was about the relationship that contributed to my healing. Originally I had written a section on what patients need from a doctor and then another section on what patients need to take to the relationship. As I was editing them for posting I realized that our relationship worked because we each brought complimentary qualities, knowledge and skills. We were collaborative partners with a shared goal of controlling my symptoms and increasing my functioning. According to Robin DiMatteo,[i] patients are most satisfied with partnerships rather than authoritarian control by the doctor because partnerships allow us […]