I live with chronic invisible illness. People look at me and can’t understand why I am not out working or why I can’t go bowling or why I don’t like dancing. Somebody asked me the other day to go muddin’, but I can’t and people don’t understand why.
My husband lives with invisible illness. People look at him and cannot understand why he doesn’t come hang out. People don’t understand why he can’t come to the potluck dinners and I take him a plate. He gets invited to go to cookouts but I have to come up with an excuse for him and nobody understands why.
Living with invisible illness is not something we chose to do. It’s not fun and it’s not an excuse. I’d give anything not to have chronic migraines and pain screaming through my whole body. I’d love to go out bowling like I used to or go out muddin’ with a friend, but I know if I do I won’t be able to move for days. I know if I am not careful I can fracture a bone or pull a muscle and end up in the hospital.
My husband would give anything not to have the heart palpitations and chest pains at the thought of a crowd of people. He’d love to be able to walk into a store without taking it all in and feeling crowded. He’d love to be able to take me to the emergency room and go in with me without ending up in there himself because his blood pressure got so high. He’d gladly give up the nausea and dizzy spells. He’d be thrilled to let go of the pain that ravages his back, legs, and ankles to the point that he sometimes cannot walk at all.
We don’t look sick but that doesn’t mean that we aren’t. We might be out doing the things that have to be done, like grocery shopping or fixing the truck, while we are crying inside or panicking.
We are Mainers, I often say. To me that means if we say we are going to do it, it gets done. To me that means if someone needs our help, we are there for them no matter what. To me that means that even though we live in pain, life goes on and we deal with it.
So you might see me walking and smiling and that is honest because no matter the pain I am truly happy just to be alive. But behind that smile there may be screaming and tears from the pain in my spine, shoulders, legs, and head.
Those who live with invisible illness are often stubborn and determined. We don’t want to let our illness stop us. We refuse to let our illnesses steal our happiness. Sometimes we do more than we should, but we do it because we wish weren’t ill.
Don’t think because you see us out and moving that means we are any less ill than we are. In reality those with invisible illnesses are some of the strongest people I’ve ever known, for they continue despite the pain and they smile despite the hurt.