You Are Not Your Disease

If you have a chronic illness, you've probably heard this at least once. "You are not your disease...." It's a trite phrase that psychologist learn in their training on how to deal with people with chronic health symptoms. But it's so condescending. I never introduced myself as, "Hi, I'm Autoimmune Hypophysitis, glad to meet you." I know I'm not my disease. Telling me that isn't doing any good. It makes them feel better because they've done their duty, so to speak. But it's not actually constructive information. Here's what I think they're trying to say: "You do not need to be ashamed of this."

They mistakenly see our griping as a cry for pity. We're not looking for that. We're looking for acknowledgement of hard work done. We're seeking recognition of the struggle we're going through. I mean, saying I'm not my disease is like saying I'm not the rain. Sure! I know that. But I still get wet. It's still miserable to stand in without an umbrella when it's pouring down. I still have to navigate around puddles and jump aside when a car splashes one onto the sidewalk. Managing my disease is hard work! That is why I'm whining.

I am not my disease, but this disease is obnoxious. It stops me from doing what I want to do. It stops me from expressing myself in ways I want to. It stops me from going the activities I want to be involved in. It stops me from spending time with my family and friends. It stops me from being the person I want to be. It stops me from having peaceful sleep. It stops me from working. It has changed me to my core. I am learning to be an entirely new person, one I never dreamed of being in my worst nightmares. That's rough and scary. I never prepared for this. I never thought this possible. I'm winging it and I have no idea if I'm doing a good job or not. And all of that is due to my disease.

Please don't minimize that.