I visited family this weekend and got asked the following question: “What’s wrong with you exactly?” It can be very difficult to explain what you are going through when you are put on the spot and you know very well that you don’t look sick. Trying to explain that although you don’t see it, I’m in sitting around the kitchen table talking with everyone while struggling on the inside due to acute pain. It makes it difficult to justify why you take so many medication, and need walking aid on a part time basis. I can walk and I can stand up, I just can’t do it for long.
So, what’s wrong with you exactly?
I have found that there are two kinds of reactions to learning that you have a invisible and incurable chronic illness.
The first reaction is to question the validity of your words and your experience, because they can’t see it with their own eyes. That reaction hurts, because you feel like you constantly have to prove that you have a or multiple chronic illnesses. The second is to panic and make you feel like you are about to die. That one, I have even less skills to handle. I immediately jump to reassure and support the person who is struggling to understand what I’m going through by minimizing my story. I realize I shouldn’t do so. I also understand it’s really hard for everyone to process it. I live with it every single day and I still struggle to define and accept what I have. I have to remember that it’s not my job to convince anyone, nor is it to minimize myself to make others feel better. (Still working on that one.)
The doctors say that the chronic illness is incurable but non degenerative, but let’s be honest, I wasn’t struggling this much 4 years ago. It is clearly degenerative, but it won’t kill me. That is a more accurate definition.