It’s around five years ago that I fell ill in ME and during these years I’ve had experiences that I never thought I was going to have. One of these is how painful it is to interact with people without chronic illness or disabilities. This is a letter to all of you healthy people without disabilities that I’m hardly in touch with nowadays.
Dear friends, family and aquaintances outside of the chronic illness and disability world,
I know I hurt you when I don’t show up for gatherings, when I don’t want to talk on the phone and when I don’t always reply to your texts and emails. The main reason is that I can’t fit interacting with you in to my very limited life, and most social situations are inaccessible to me. I won’t apologize for that, because the inaccessibility is not my fault.
However, I want to explain something to you. My silence isn’t only because of lack of ability and accessibility, it also stems from the pain it causes me to interact with you. Everything in my life is affected by my disease and my disabilities but to you it seems like I’m supposed to be the same person, just in a wheelchair. But you see, when you talk about what you think are causal, safe subjects, I’m reminded of how small my life has become. I don’t know if the winter was cold because I can’t go outside. I don’t know if I like the new ice cream at the beach café, because I can’t go to the beach and I can’t have ice cream. And I don’t know what I think about the new book from the author I used to love because I couldn’t focus enough to finish it.
When you try to show me that you care about me by saying that you hope I will get well soon so we can get together again, I’m reminded of that there are no good treatments for my disease and that you don’t seem to understand that at all.
When you ask me if I need help with something but demand that we talk on the phone in order for me to get that help from you, I’m reminded of that you don’t get that talking on the phone can make me so ill that I can’t be around my child that day.
Having ME means living in a parallel world, a world that is more bizarre than you can ever imagine. It means having a severe disease that most doctors choose to not know anything about, a disease with a huge stigma created by fraud ‘scientists’. It means not only fighting for my life everyday because of the disease, but also fighting due to the harm caused by fake science and healthcare professionals who believe I’m ill because of ‘false illness beliefs’.
I don’t expect you to understand this, but as long as you don’t respect what you don’t understand I can’t be around you. It’s too painful to be reminded of everything that was taken away from me.