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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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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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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