When I was a kid and my symptoms first started, a lot of people said that it was all in my head. Doctors, nurses, teachers, friends, and family all expressed doubts at one point or another. My mother was the only one who never doubted me. I heard it so much that even I started to wonder myself.
After 11 years of symptoms, it was a relief to finally have a blood test as proof. ”Look world, it’s not in my head, it’s a real thing!”
Now I’m fighting the same fight again. Only this time, instead of saying the pain isn’t real, people are saying it isn’t bad enough. I keep wondering, how sick is sick enough? What’s the limit? What’s the definition? My boss clearly didn’t think I was too sick to work. Or maybe that was just wishful thinking on her part. The long term disability insurance folks have said that they don’t think I’m too sick to work. I’ve been spending months preparing the materials, bit by bit, to prove otherwise. Now, I just found out that the MassHealth folks (our state medicaid system) also don’t think I’m too sick to work. Now I have to figure out how to prove otherwise to them, too. Of course, I’m expecting to get denied by the SSDI folks, since almost everyone is denied on their first try. I just applied, but I’m pretty sure I’ll have to work on an appeal. I got dumped by a doctor who’s tired of dealing with my expensive tests and extensive paperwork, and who was unwilling to state for the record that I’m too sick to work (even though he said it off the record many times.) He told me to have another doctor do it.
Being this sick is the worst thing in my life. Being unable to work is demoralizing and scary. So what’s happening? Instead of focusing on the positive parts of my life and trying to work through this crap, I’m forced to focus on the worst parts of this crap and explain and define it over and over again for all of the doubters. I’m forced to examine and then reexamine the most negative parts of my life and lay them bare for strangers to judge me. And they certainly do judge me.
I’m not the first person to go through this and I won’t be the last. But at this moment, I may be the most irritated. I just want to yell at all of those idiots, “If you don’t think I’m sick enough, then just how sick do you think I need to be? How sick is sick enough? How sick would you have to be to not be able to do your job? How sick would your kid/parent/sibling/best friend need to be to not be able to work?” Not that I think it would do any good. I’m just tired of being judged.