When I first found out I have CRPS, it was still being called RSD (Reflex Sympathetic Dystrophy). RSD was not on the list of disabilities that the federal government recognizes. If you were disabled by RSD/CRPS, you were SOL according to the government. I know some people have been successful, in the 11 years since then, in obtaining disability benefits, but I also know that they have to fight to get them.
Partly because of that non-recognition, and partly because I did find medication that kept my pain to a manageable level, I very rarely said out loud, “I have a disability.”
But things have changed.
Ever since I hurt my ankle and the CRPS spread, instead of being in the pain range of 2-4, I’ve been in the pain range of 4-6. A five means that the pain is just present enough to be constantly aggravating, but not bad enough that I can’t walk at all. Basically, it’s enough to remind me that I have CRPS. You know, in case I ever forgot.
Walking is harder. Carrying Cassie is harder. Even sitting in a normal chair is harder. It’s just how it is.
But what ultimately got me to give in and admit that I have a disability, in spoken words, is my job search.
Traveling for more than 45 minutes to 1 hour is not good for my pain levels. I should not drive myself long distances, partly because of the pain, and partly for another reason that I choose to keep private. (I do that sometimes – keep things private.) I have always looked for jobs that allowed me to telecommute, but until now, I never admitted why. Some of that hesitancy came because I have a friend who is actually paralyzed and in a wheelchair. Some of it came because I didn’t want to be seen as playing the “disability card” for sympathy. But most of it came because I didn’t want to be discriminated against as I was at Oracle.
But by not saying why I need to telecommute, I was automatically counted out for specific jobs. At least when I say, “I have a disability,” ethical employers should take a few moments to think, “Is being on-site really a job requirement? Is it a bona fide occupational qualification (BFOQ)?” Most often, they’ll likely say “Yes,” and move on to the next candidate. But all it takes is for the right employer to say, “Maybe not,” and investigate my experience further. I need only two accommodations: the ability to telecommute, and, if I’m going to be on-site for more than a few hours, I need to elevate my legs. (Yes, both of them. Elevating one does weird things to my back. I have an office chair with a built-in footstool here. It’s awesome.)
So, yes, I have a disability. Maybe someday I’ll get more comfortable saying that out loud. Maybe someday I will own it. Today, honestly, it just makes me sad.
(Photo Credit: Pinterest.)