Being visibly invisibly ill.Posted: April 30, 2016
I am awaiting an envelope, and that envelope will tell me when my ATOS assessment for my third PIP application will be. Third application, third assessment. I should be a pro at these by now.
When I had my appeal hearing back at the beginning of March, they asked me about my graduation. Not being at uni, or work, the actual ceremony. Did I go there myself? Were my family there? Why? Did I have to walk up steps? Did I use my sticks to walk across the stage? Did I talk to anyone? How did I get home?
Not gonna lie, about five minutes of questioning was based on around thirty seconds of my life.
My graduation was a very special day. It was not a “usual” day, and on that day I did not do my “usual” activities. I wanted to look nice, I wanted to enjoy myself, I didn’t want to walk across the stage with my sticks and I wanted to talk to people. Because I was so determined not to miss it, I accounted for days before and after it in order to save energy and then have time to recover afterwards.
I don’t want my full-time job to be “ill person”. Dealing with it is a full-time activity and it’s not going to disappear but I don’t need to have that as my primary identity: “Emsy, The Ill Person”. But anything I do that puts my illness into the number two spot (anything that requires me having to act like a regular human being and do things like “get dressed” or “leave the house”) is questioned by ATOS as a signifier that I’m not actually ill. If I don’t walk around (well, maybe not walk because, ATOS…) with a placard saying “GUYS I’M ILL” then I’m not ill. Or, I’m not ill *enough*.
I want to deal with my illness in my own way, in the way that is the best way for me and my (physical and mental) health. But if I do, I won’t be believed. At what point am I going to have to sacrifice money I need in order to have a sense of self-worth I also need? Because apparently, I can’t have both.