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S/he Loves Me, S/he Loves Me Not: An Unequal Relationship

Since I lost my doctor (isn’t there a really old country song with a similar title?), I have been thinking a lot about the nature of the doctor/patient relationship. I’ve gone to doctors from whom I was basically purchasing a service but that isn’t a relationship. What I have been thinking about is the type of relationship that is built when a doctor helps us through a very difficult health problem by not only being competent but also being kind (see my post on Kindness). Being sick generally results in feelings of helplessness, and when we have an illness that we know doctors may not recognize and take seriously, we feel very vulnerable to not getting our health care needs met at best, and being abused at worst. What I have read (from both the patients’ and doctors’ perspectives) has led me to the conclusion that it isn’t the patients’ fault (although some patients can be very difficult and uncooperative) or the doctors’ fault (although some doctors can be disrespectful and rude). As my doctor told me, forming a good partnership is difficult because fibromyalgia is a gut wrenching problem for patients and a daunting one for doctors. Here are my thoughts on this relationship. One of the characteristics of a good doctor/patient relationship is that the doctor is genuinely caring and expresses concern about our pain and distress. The doctor is there for us when we feel our worst, are most fragile and are helpless in helping […]

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Talking About Pain

During the first year I found that being sick brought up a lot of old, unresolved issues. It makes sense that having a chronic illness that decreases our functioning and increases our need for help from others would bring up issues around dependency, asking for help, and self-esteem. It can also bring up idiosyncratic personal issues, and a huge one for me was understanding, communicating and coping with pain. This was my favorite journal topic during that first year. I struggled to know how and when to communicate pain to others, especially those who were helping me most often – my husband and doctor. I made the decision as a 4 year old that I wasn’t going to tell anyone about my pain, ever, and I would take care of myself. I had been badly hurt by a family member and I learned that if I told anyone about my physical pain they would create even more pain and I couldn’t handle any more. This was reinforced throughout my childhood by being told, “Stop your crying or I’ll give you something to cry about.” As a child I couldn’t understand the logic of that statement and I still don’t. As an adult, I remained true to this decision and even when I experienced very intense pain, I didn’t tell anyone until I would end up in the emergency room. I don’t think I developed a voice for pain or learned the social “rules” for pain. Psychotherapy taught […]

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Facing Change – Maintaining Integrity

My doctor introduced me to the term “new normal” and it intrigued me – probably because I was well on my journey to finding one. And it was a hard journey, as bumpy and wild as the five-day tour of Kyrgyzstan in a 4-wheel drive van driven by a guide who had fantasies of being a bronco rider – more about that in future posts. The journey to a new normal was full of doubt, fear, pain, sadness, and anger and it required a major change (not just a shift) in how I thought about myself and my life. It took courage and perseverance; sometimes I wanted to give up but I didn’t know how. Even though I became discouraged at times, I always had a strong drive to find a way of living that had integrity. But what does a new normal consist of? I wrote this in my journal in October 2004, ten months after being diagnosed. For many years I have found strength and direction in the following words by James Baldwin (1961, Nobody Knows my Name, p.100):  Any real change implies the breakup of the world as one has always known it, the loss of all that gave one an identity, the end of safety. And at such a moment, unable to see and not daring to imagine what the future will now bring forth, one clings to what one knew, or thought one knew; to what one […]

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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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