Coping with self management

Patient activation, self management, shared decision making . . . all of these sound great. I would be very happy to self manage—if I could figure out how.

Seven years ago I was diagnosed with stage 4 diffuse large B cell lymphoma. Chemotherapy pushed the disease into remission but it also left me with long term side effects, one of which is a poorly functioning immune system. I can just about manage the immunoglobulin infusions, blood tests, flu jabs, and infections—but if you add anything else into the mix my carefully self managed house of cards collapses.

Last summer, for example, I developed an unusual patch of skin on my leg. Years ago I had something similar and it turned out to be from an autoimmune condition. “Isn’t it strange,” I said to my immunology nurse, “that someone with a weak immune system would also develop an autoimmune condition?” Quite frankly I was a …