It reminds me of when my daughter, at the age of 15, got a raging case of mono. It was horrible to watch my kid suffer as she stayed out of school for an entire semester and had a teacher come to our home 3 days a week to check on her progress. After she was well enough to go back to school, she developed mind-crushing headaches and needed long afternoon naps. I thought it was some leftover from the mono; maybe Epstein-Barr or chronic fatigue, but the labs kept coming back normal. I remember the frustration of seeing my formerly vibrant daughter suffer and cry because no one could figure out what was wrong with her. All she could do is learn to live with the constant headaches.
Six years later, the symptoms finally abated, and we’ll never know what was wrong with her. But I always harbored the irrational frustration that only a mom can have at the docs who insisted there was nothing wrong. Clearly there was, but no one could find out what. So did that mean that it wasn't real, or were they suspicious she had a mental problem? It wasn’t that the docs didn’t try. She had CT scans, MRIs, blood tests, but nothing ever popped up. Sadly, it will always be a mystery.
Which brings me back to these fibromyalgia sufferers. I have no idea if it’s real or not, and I make no judgments either way. But after experiencing a damnably puzzling and frustrating number of years with my daughter’s undiagnosable (Lordy, is that word?) affliction, I can’t help but wince reading the number of medical people telling fibro folks, “I don’t believe you,” and making fun of them.
The only thing I can think is that these medical heroes (and, yes, you are heroes) have their reasons for believing as they do about fibromyalgia. I’m just so grateful that no one said this to me or my daughter. Her pain and suffering was real, even though no one knew why. And is there anything more frightening than that? It makes me wonder if it’s possible to have something terribly wrong and not be able to find out why.
And what does this mean for the medical community? If there's nothing that shows up, how does one go about treating it? I can see where an inability to diagnose could turn to doubt and derision on the part of the medical world, but it makes me wonder how fibro can afflict so many people so consistently, yet there isn't a test that will reveal what it is. And since we can't say we know absolutely everything about the human body, is it necessarily fair to deride these sufferers? Or do I have this all wrong?