I’m not doing well. Really, that’s a huge understatement. I don’t have any clever sentences or pieces of humor to lighten this terrible disease we struggle with day in and day out. Still outside of personal struggles with our symptoms, pain, fatigue, depression, limitations, grief, loss and so much more the hardest thing to deal with is other people. We have to fight with our doctors and insurance companies for help, with our friends and family for understanding and empathy and the world at large for a little bit of room to move not like a “normal” person. Even worse is when our illness is used against us, when we are treated like criminals, drug seekers, malingerers, liars, and so much else.
The disability hearing was emotionally painful beyond words. It was the sum of all those years of everyone from doctors to employers to strangers to friends accusing me to my face that my illness was nothing more than a farce and if I just tried harder I could go back to being a normal person. It was devastating. I would give anything, anything in this world, to have my life back and suggesting otherwise, well, it’s just a button I think that everyone single one of us can’t handle being pushed.
This is a terrible life, most of us don’t want to live it at all. However, we do. We fight, we fight in the hopes of getting better. We fight in the hopes of just finding a way to balance the life we are leading now. We fight for the little moments of joy that are so very rare. We fight to find meaning in the darkest of places. Still life throws us things that make this fight harder and being attacked for being sick is the hardest for me to overcome. It happened once a long time ago, leaving quite the scar. It happened again recently where my limitations were used against me. I find it hard to describe the feeling of helplessness and betrayal. I don’t think the mental repercussions were considered. That’s this life though, right? You don’t get it unless you’ve got it. Between the two I’m done.
I work and I fight and I work and I fight and I work and I fight and it feels like I just can NOT catch a break. Maybe it seems like I’m complaining about a few little things, but really, I’m just not willing to list all the fronts I’m battling at the moment. I’m tired. I’m sick. I’ve had enough. I need a break. Don’t we all?