It’s been awhile since my last post. Almost four months to be exact. Why the long absence? Things have been hectic that is for sure. Finished my Ph.D., started an internship, got promoted to full-time, took a small break to visit family, moved to a new apartment.
However, if I am truly honest with myself, a major reason for not posting is that I doubted myself for a time. Why the doubt?
In April, I was referred to a new pain specialist. My fellow spoonies likely know where this is going but for those of you reading to try to understand the struggles of invisible illnesses let me explain. Going to this appointment, there was already a sense of frustration because, for the dozenth time, a doctor was pushing me off to someone else because they just didn’t know what to do with me.
The appointment went like every other appointment with a new doctor. I went through the history of my last seven years struggling with chronic pain; and then he did a physical exam. I was a little relieved during the exam because that day was a good day and those tender points they always check weren’t crazy painful. However, my lack of reaction to at least 11 out of the 18 tender points led the doctor to believe that I don’t suffer from fibromyalgia at all. To this physician, a fibro diagnosis requires you check off every symptom and fit the description that he learned exactly.
And just like that, I spiraled downward into a cycle of self-doubt and uncertainty. After a five-year struggle, to be diagnosed with fibromyalgia was such an enormous relief. Don’t get me wrong it was a complicated mix of emotions. There was a bit of fear knowing this would be a life long struggle. There was a bit of anger and wondering why me. But mostly, there was a lot of relief because there was finally a ‘face’ to put on this chronic pain I had struggled with. I wasn’t crazy! There was something wrong with me.
Then in one foul swoop, I was left wondering once more. I let this self-doubt eat away at me for much of the past four months. Despite being in the midst of a flare for much of the last month, I have refused to go to the doctor. I elected to do what I learned best in those early years and paint a huge smile on my face and pretend that nothing was wrong. However, that only works for so long before your resolve eventually breaks.
Frankly, I am angry with myself for letting that doctor get to me. If there has been one thing I’ve learned through all of this it is that I know my body better than anyone. My pain is very real. My fatigue is very real. Just because a doctor saw me for 15 minutes on a good day doesn’t mean he can make a definitive diagnosis.
I know my body, and I know my pain. I am a fibro warrior!