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Loss of My Doctor

The doctor that I have had for the past 10 years seemed to be a gift from God. He understands how difficult fibromyalgia is for the patient, has an excellent problem-solving mind when presented with a new symptom, welcomes new information about treating FM, cares deeply about his patients, and gives the time a patient needs. There were a few rough spots through the 10 years, but our relationship seemed to be very satisfying for both of us. I thought he cared for me, appreciated how I worked with him, and I knew I respected him so I was dreading when he retired in a few years. When he retired I knew it would be hard but I also knew I would be happy for him and together we would find someone else to take care of my healthcare needs. What happened, however, was totally unexpected and is taking a long time to deal with emotionally. I have Medicare insurance and he made the decision to not accept Medicare reimbursement if congress didn’t stop the decrease in payment to health care professionals, so this meant he would no longer be willing to treat me. Congress did put a hold on the cut but I had already felt the wound of betrayal and after a lot of thought and tears made the decision to discharge him from having responsibility for my primary healthcare needs – I fired him. What pained me most was that he hadn’t […]

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Kindness

In this post I want to share with you the reflections of a doctor going to see her doctor. This was written in a creative piece entitled Kindness by Dr. Scholten, who provides healthcare to refugees in Canada, [i]. It is especially potent because she has experienced being both the doctor who is appreciated by patients and then a patient who feels gratitude towards her doctor. So often we wish that our doctor could be in our shoes, could experience the emotional turmoil we experience, that can only be touched through kindness. Sure we need doctors that are competent and capable but there are times when these qualities just aren’t enough. She begins her story by saying that she had helped an Eritrean couple who were new refugees to Canada and facing an unplanned pregnancy. They come to her office for the last time before continuing with an obstetrician and the husband expresses his deep gratitude to her with a small speech. Obviously she had touched them deeply with her caring and help. She writes, however, that she is “embarrassed that I’m thanked for dispensing something that cost me nothing: no education, no honing of skill, no effort. I’d rather be thanked for diagnostic prowess or a deftly performed procedure.” It is clear in her statement that she underestimates the importance of her kindness and she believes technical skills and intellect are much more important. She writes that she forgets their gratitude as […]

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Being Sick and the Sick Role

I struggled a lot over what it means to be “sick” and this was a major theme in my journals beginning in the first year and continuing for about a year and half after developing symptoms. Here is an early journal entry, about six months after diagnosis: When I have a pain-free day, I become more sympathetic with myself and recognize how hard it had been to function on the previous days. On the other hand, when I am going through a string of difficult days, I get really angry when my husband comments on my being “sick.” I don’t want to be thought of as being sick! It is interesting that I am having a difficult time writing “my pain,” preferring to talk about “the pain.” Maybe I don’t ever want to accept “the pain” as being “my pain.” It feels like talking about “my pain” would mean that I have taken on the “sick role.” I refuse! (9/04) I had a vague understanding of what the “sick role” meant but finding articles that explained it in depth started me thinking about how to better understand my struggle. I was struggling to understand what it meant to be sick while at the same time maintaining a “non-sick” relationship with my family, work, friendships, and community, and especially what it means to my sense of self and self-worth. The concept of the sick role was developed as a way to […]

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Losing Control of My Life

When we get sick we need to shift our attention, and our energy, from our normal activities to getting well. I will be sharing information and my thoughts on the sick role in future posts under the category In Sickness and In Health. In that first year I had a really hard time getting my mind around the fact that chronic meant forever, maybe because I was so afraid of what forever in pain meant for my work and play. I began to understand, but really didn’t want to know, that it meant I was never going to get well, that I would have some level pain and would need to work to maintain my energy – and I probably would never get back the life I had known. Although I had a strong desire to continue working full-time and to have a life outside of work, being sick seemed to become who I was and what I did. I had lost control of my life to sickness. My life became weekly doctor appointments to adjust medication dosages, discuss ways to treat new symptoms, or for acupuncture for pain. Life was also consumed between appointments by doing things to get the most from my time with my doctor, like creating charts of sleep quality, or pain levels, or amount of fatigue. I was thinking about symptoms all the time which meant that pain and fatigue were controlling my life. Don’t misread me – I’m not criticizing […]

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Meaning in a Quilt

During the first year after being diagnosed with fibromyalgia, I was desperately trying to hold on to the life that I had lost. I spent hours sitting, looking out the window, trying to figure out how to make sense of what was happening to me and how to cope with my fear. I needed a diversion so I started piecing together a new quilt […]

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