Being visibly invisibly ill.

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.

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2 Comments on “Being visibly invisibly ill.”

  1. paininthemum says:

    I don’t have the answer. Sorry. I feel the same though, if that helps. There is a strange conflict between trying to manage your life to the best of your ability and yet continue to conform to the standards you need to meet to be accepted as still ill. It’s like when I go out. Some days I’m ok to walk a few steps around a shop, but actually find myself wondering if I should do so, just in case someone thinks I’m ‘better’. The truth is I need every bit of help I’m getting, I just have a few moments of relief here and there, for which I find myself feeling guilty.
    Congratulations on your graduation. Try to focus on what you have achieved rather than the clunky depersonalised system we trudge through. As for the day when pip stops? I’m looking forward to it, personally. Hopefully I’ll be doing well enough not to need it anymore. Scary, but exciting prospect.
    Good luck X


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