I experienced a grief reaction to having a chronic disease. I knew that my feelings were normal for a patient, but I also felt somewhat guilty for having these feelings. I felt that if my patients could cope, then why am I having difficulty? I counsel patients all the time and felt this should somehow make me better equipped. I discovered instead that there is an enormous emotional component when the patient is me. Denial led to my reluctance to seek care right away. I felt a sense of loss of health and function.
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Explore This IssueMay 2015
I also felt a sense of loss of control. Rheumatoid arthritis is unpredictable, and I did not know how well I would function from day to day. I cried, usually while I was alone in my car. I had stepped into the role of the patient. My husband, also a physician, has been supportive after he recovered from his yarn comment blunder. However, I found that it’s more difficult to have the full support of extended family when I am an expert in my own disease.
Doctor to Doctor
As a rheumatologist, seeing another rheumatologist for care was a surreal experience. I felt caught between wanting to be a well-behaved patient and wanting to take control. At my first visit, my doctor told me, “I don’t start a DMARD at the first visit.” I did not push the issue, because I was trying to establish a good relationship and be a good patient. But another part of me felt I should have challenged this. I know that my rheumatologist was also trying to do what was best and to treat me like any other patient. But I was not the typical rheumatology patient.
I can never be just a patient, because my own knowledge base and experience influence every visit. I already understood what came next. I did not have time to gradually adjust to my diagnosis.
I knew immediately that I am at increased risk for osteoporosis, cardiovascular disease, lymphoma, disability and death. I had seen the worst cases, and I knew what can happen.
At that first visit, I started prednisone, and within a couple of weeks, I was also taking methotrexate, less than two months after I awoke with hand stiffness. The first time I went to the lab carrying a slip with 714.0 written on it was also a strange experience. I had written that billing code for rheumatoid arthritis for my own patients countless times, and now it applied to me.