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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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Our Bed & Breakfast Yurt

We have had a very exciting but rough ride up to the mountain pasture at Son Kul and I am ready to settle into our en-suite room. The driver has directions to our yurt but these are sketchy because the roads don’t have signs. After driving through a stream and going some distance, there isn’t anything there. Nothing but wide […]

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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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