For six years I have lived with chronic pain and fatigue without having a clear diagnosis. Different doctors had different ideas of the cause or possible diagnosis such as fibromyalgia, peripheral neuropathy and/or myofascial pain. Various testing was used to look for abnormal blood work or physical characteristics as well as medications they might determine swelling or other problems. The continuous normal results brought about a greater focus on pain management and less on the potential cause of the problems.
Having a firm diagnosis didn’t seem to be an issue as my actions would be the same regardless of the label. I found it helpful to put a limit on my search for a cause, as my doctors were diligent in helping me reduce my symptoms. I would continue to do research, exercise and try alternative treatments along with medication adaptations as needed. Even though it wasn’t clear what I had, I did a lot of reading on fibromyalgia, chronic fatigue, myofascial pain, MS, and Lyme’s disease as it would increase my knowledge of coping skills and treatment possibilities for various symptoms/diseases.
My identity of being someone with chronic pain felt inadequate. Chronic pain is a very widespread problem with a great deal of variation. It felt simpler to speak of my chronic back pain, as this was my greatest symptom and where I often needed the most adaptation. However the fatigue and widespread body pain also contributed to some drastic life changes. Pain is very subjective, so it could leave me and others wondering if my perception of my pain level was over exaggerated.
Having a diagnosis is necessary for receiving services and treatment. In our society, the doctor’s diagnosis is crucial for all kinds of services. For disability applications, employment services, medication, and treatment, people want to know the cause and have it verified by a doctor. My doctors have always been good about sending the necessary information and reports for my medical treatment, so I never checked into what specifically was being communicated. As I began to seek outside services, such as employment and legal protection, I found I needed to verify the diagnostic label, if there was one, for my symptoms. Surprisingly, doctors don’t always communicate this information.
For years, I was diagnosed with Fibromyalgia in my medical chart. I have heard of this possibility many times by different doctors, but never had it confirmed as my diagnosis. In my mind, and that of many others, this is a difficult diagnosis because of its variations and often “normal” lab work. Though I could see I met the criteria, I didn’t like the psychological stigma it also carried. Initially I was extremely resistant to considering this a possibility, as I was looking for something I felt was more concrete. As time went my I became more open, and found I would prefer this “club” to the “chronic pain club” as it represented my struggles much more accurately.
In many ways I feel as if I have a new identity that I haven’t quite integrated yet. I find myself hesitant to say “I have fibromyalgia” and realize that I still have shame over my own symptoms that I see as inadequacies. I also feel a degree of relief because of the support of my doctor, and having a label that can help me receive further support. This gives me a greater sense of community as the fibromyalgia organizations and support groups are numerous. Having fibromyalgia is part of who I am, yet it isn’t the complete picture. My assets, strengths and abilities haven’t changed because of this disease or because of my diagnosis.
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do,” (Eleanor Roosevelt). Today, I will take rest in the assurance that having a diagnosis will guide me in taking steps to a forward focused on what I can do.
Elissa
Chronic Pain Journals 