I had intended to tell my story in chronological order, but I realized that this had become an excuse for not writing anything at all. A friend at Trent labelled our sort of physical disabilities (she suffers from Crohn’s disease) “Invisabilities.” She said the word arose from the most common reaction to telling people about her illness. People would look at her and say, “Well you don’t look sick.” I too have lost count of the number of people who have said that to me, many of them doctors.
I think the main reason so many people with diseases like fibromyalgia struggle with depression is a lack of validation. We are told so many times that it is all in our head that we start to believe it. We start to question why we can’t will ourselves well. What is wrong with us? The answer, of course, is that we really are sick. It is not all in our head. We are not making it up. I think this simple validation does wonders for the mental health of anyone suffering from any sort of chronic pain condition. Remember that you are not alone and that your suffering is real. Then you can start to deal with it.
I remember my first specialist. My family doctor sent me to a pediatrician because he couldn’t figure out what was causing my migraines. Back then I still thought doctors could cure everything so I was very excited to go see this specialist. I was sure he would have some magic pill that would make the pain go away. In the exam room, he spoke solely to my mother even though I must have been thirteen by then. After poking and prodding me, and grilling my mother his brilliant diagnosis was: I didn’t like school. The cure for this was to force me to get up earlier in the morning. He also prescribed adult strength prescription pain killers. I guess on the off chance that I really was in pain and not just avoiding the school I loved. Thus began my slide into cynicism about the medical community. Not that there are not great men and women working in it. I have even met some of them, but far more often I see doctors who no longer have the time to or interest in listening to their patients.