It sucks to be sick. Full stop. A UTI sucks. Pneumonia sucks. Cancer sucks. People who have chronic illnesses, though, have an additional set of challenges to face. Some of these challenges are summed up in the idea of self-management, which is complex in and of itself. The definition of self-management that I like comes out of academic work* and it has three parts:
1. Medical managment
2. Role management
3. Emotional management.
I like this definition because it recognizes that there’s more to having an illness than remembering to take your meds and go to your appointments **. And some healthcare people have a hard time remembering and understanding this. The vast majority of chronic illness care isn’t something that we do for you in the clinic or hospital. It’s what people do day-in day-out in the process of living their lives.
I went to a conference last week and heard a talk by someone who has done a lot of very important, effective, and well-regarded work in this area— a nurse, of course— and she told us that her research showed that 80%— yes, 80%— of self-management is essentially the same, regardless of what the illness is. Diabetes, heart disease, RA, the list goes on and on, whatever it is. Let that sink in for a minute. That means that the part we focus on so much— that is, the medical management— is relatively minor in the big picture of living with— self-managing— a chronic illness.
I bring this up because I believe that first, we in the health professions need to recognize that giving support to a person with a chronic illness is not necessarily what we assume it is, and because second, GIVE THESE FOLKS SOME CREDIT. They are the experts. I’m not the expert. Your doctor isn’t the expert.
Do you have a chronic illness? Know and love someone who does? Take care of someone who does? Does this ring true?
Corbin & Strauss (1998). Unending work and care: Managing chronic illness at home. Jossey-Bass.
Lorig & Holman (2003). Self-management education: History, definition, outcomes, and mechanism. Annals of Behavioral Medicine, 26(1), 1-7.
want to read MY academic writing on the subject?
Knight, EP & Shea, K. A patient-focused framework integrating self-management and informatics. Journal of Nursing Scholarship, 46(2), 91-97. http://www.ncbi.nlm.nih.gov/pubmed/24354997