Who Volunteered Me to be Sick?

In the previous blog, Being Sick & the Sick Role, I shared Parsons’ characteristics of the sick role that included: a) others recognize that the illness is involuntary, that getting sick was not the intention of the person who is sick; b) when people are sick they are exempted from their usual work, family, civic, and other obligations; c) they are expected to not want to be sick and to do what they can to restore their health; and d) are expected to seek competent help and to cooperate in the process of trying to get well. Parson identified these characteristics to help people understand how life is expected to change for people who have acute illness. I believe that having a chronic illness leaves us in a very strange position of both needing to use the sick role, but also needing to very strongly reject it. This blog is about how a chronic illness, especially one that is invisible, can muddy others’ perceptions of whether our illness is involuntary and our intentions. In fact, they can muddy our own perceptions. Susan Wells tells about her experience of trying to get a diagnosis when she was having frightening symptoms and none of the doctors she went to could find anything wrong. She says that she used what little energy she had left after working and taking care of her family to find out what was wrong – which included trying […]

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Sharing the Big “F’s”: Frustration & Feelings

 I started keeping a journal when I was diagnosed with FM 8 years ago. I am now using those journals to identify the issues that I faced, some of the lessons I learned, and to share my journey of coping and healing. During that first year I felt very lonely because I didn’t know how to talk about my frustrations and feelings with family, friends, and the people I worked with. Maybe I was afraid to talk about them. Almost everyone I knew was aware that I was diagnosed with fibromyalgia because they had been very worried when I got so sick so quickly. Our local newspaper also ran a feature article on someone with FM right after I returned from Mayo with a diagnosis. Because the people around me cared and were informed, they would ask me how I was doing and usually I would say fine and changed the subject. It just didn’t seem appropriate to say things like: I’m angry because I don’t have the energy to get my work done; I’m scared that I won’t get my life back; or, I’m so frigging tired of being tired (or hurting, or crying). Sometimes I would talk to people about how I felt when it seemed appropriate and I thought I could trust them. Sometimes these people had their own health problems and frustrations. Sometimes my experience became a shared experience that brought us closer together and we […]

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A Working Partnership

Having a doctor with whom we have a good working partnership is very important for us when we have been diagnosed with a chronic illness and are trying to put our life back together after the diagnosis. It seems that patients are most satisfied with partnerships rather than authoritarian control by the doctor because partnerships allow us to participate more in healthcare choices, leading to more informed decision making, better follow through and adherence to the treatment plan, and ultimately better health and quality of life[i]. The type of relationship we need with a doctor is different under different circumstances, and our needs are influenced by personality characteristics, culture and can vary with the severity of symptoms and illness. But our reality when we are attempting to get the symptoms of  a chronic illness under control is that we will need to spend more time attending to our health care needs and this requires maintaining a good working partnership with a doctor. With the help from a doctor who we trust, our symptoms are more likely to improve, we are more likely to regain functioning, and will be able to sort out what activities from our old life we are able to keep or resume, which ones we can keep but in a modified form, and which ones we will let go of.  The excellent working partnership that I had with the family doctor who helped me get control of […]

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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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