Flash back to elementary school: the teacher tells us that we have to go to the nurse’s office. We line up outside the door, no one quite sure what’s going on, everyone asking the people near them what we’re doing. One by one we’re called in and told to take off our shirts and lean over. Mortified, but a ‘good girl’ who did what she was told, I did it. I only later found out that the nurse was screening for scoliosis, and that my parents had signed a permission slip, but not thought it necessary to mention it to me.
The nurse made a list of those who she thought might have scoliosis and should be screened by a doctor. I was on the list. The doctor actually came back four times. Four times I had to take my shirt off in front of a man I did not know and lean forward. I remember just how I felt, how sick and embarrassed and violated.
The doctor eventually decided that my spine was ok.
It started with shoulder pain. Then back pain. My parents brought me to doctors who told them I was having growing pains. Then the pain spread to just about every part of my body. I went to more doctors than I can count. One, a rheumatologist, diagnosed me with fibromyalgia, a relatively new term at the time, when I was twenty-one.
For almost 20 years I have been fighting to find a doctor who would pay more attention to what I was telling them than to an old diagnosis. I would tell them that I could feel something structurally wrong with my body. I would tell them the story of the scoliosis test. Every single doctor ignored what I had to say and tried to explain fibromyalgia – something they don’t really understand and have no idea how to treat – something they essentially made up because they don’t know how to explain a group of symptoms – as if I was just not that bright. As if my pain was not as bad as I said it was. As if I was looking to score pain killers. As if they understood my body better than I did.
No one would give me an MRI. I literally begged for one. I was repeatedly told that it was not necessary because fibromyalgia does not show up in any screening methods. I told them I do not have fibromyalgia. They didn’t believe me.
Finally, finally, when I had a new pain that was causing me to scream out in my sleep, I went to a doctor who agreed to send me for an MRI of my hip, pelvis, and lumbar.
Guess what? I have scoliosis. It has led to at least two herniated discs. I’ll have an MRI on Wednesday to find out what’s going on in my neck and thoracic area. I am convinced they’ll find all sorts of things in my mid-back, which feels like it has fallen to pieces.
So I’m looking at surgery, and just maybe the incredibly new experience of living without debilitating pain. I can’t quite imagine what that would be like.