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 ended up having a really good laugh about our situations. But sometimes I was afraid to talk about it and I wanted to avoid people – I just went home and hid. I was looking for a way to let people know how hard life was so I didn’t feel so lonely but I didn’t always know how to do it. If I said too much, I was afraid that I would be seen as a whiner and complainer and it would make people want to avoid me. Deep down I felt weak and defective and didn’t want people to see that part of me. What I learned: If I don’t share my frustrations and feelings, I will be lonely. I will become even lonelier if I talk about my frustrations and feelings with the wrong people, at the wrong time, and too much.
I discovered through the grapevine at work that there were other employees who were diagnosed with FM. At first I thought that we could support each other but I soon discovered that they didn’t seem to want to talk about it either. Maybe they felt like me; living with chronic pain and fatigue while trying to get my work done took more endurance than I had. The few times we did talk about it, it felt like they also needed to pretend that everything was “normal” so they could make it through the day. I suppose we could have shared ideas for what helped with symptoms, but this made for a very short conversation because there didn’t seem to be many options and what worked for one didn’t seem to help the other. I wanted to know what others were experiencing but talking about how miserable we were got boring really fast. Besides, I preferred to do my crying in private.
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