Mini rant of mine. Just something that drives me crazy. When someone, like one of my idiot relatives makes a comment to me when they have a very rare case of being mildly sick with something like a forty eight hour bug or a regular cold, just something where in a few days or week tops they are then back on their feet again right as rain and we're all still chronically ill. My cousin called me up once when she was sick with some mild thing and she kept saying how she couldn't stand not having her full energy. And I just wanted to scream because I live like that every day. And then, of course, a few days later, she was just fine and back to work and social events, while I was still left housebound and too sick to move. Any time one of the relatives tells me, "oh, we have some health problems here", I'm like yeah. They have no clue what real health problems are. Their health problems consist of badly stubbed toes. Literally. My cousin called one day and said how she stubbed her toe and it was the worst thing in the world that ever happened to her in her life. And I'm just sitting there like, OMG. That should be my only problem in life. I have a neighbor who had a mild forty eight hour thing. You should have heard him go on and on about it. He went to a clinic, insisted that it could be serious. He just plain wouldn't stop complaining how he didn't feel well. Two days later, there wasn't a thing wrong with him and he was out and about and walking half the town. And he made a comment to me about "how can you stay in all the time, I'd go crazy." People just don't understand. They don't get it. We have a chronic illness that never goes away. I'm in pain and have no energy every single day and I don't get a health vacation like they do. There is no vacation from this chronic illness, it doesn't let up. It doesn't go away. I don't get to just be sick a few days or two weeks and then be suddenly just fine again. I haven't had my health in many, many years.
When I tried to explain this disease to one of my cousins, she kept saying, "that was a long time ago". Every time I tried to tell her that I got sick in 91. She just kept saying, "that was a long time ago, get over it." And I told her it's a chronic disease. She couldn't grasp her brain around there being anything chronic in the world. And since chronic didn't exist for her, she decided to tell me I was mentally ill and needed a shrink.
I didn't know what chronic was before I got sick. When the doc gave me the diagnosis of "Chronic Fatigue Immune Dysfunction Syndrome", the first time I heard it, I was like, What? It get's better, right? When does it go away? And he was this doc who never had much bedside manner or personality, he was always blunt and to the point. And he said, no. No cure, Chronic means, indefinite, ongoing....forever. Then he said in the same emotionless voice of a funeral director, I'm very sorry, but I cannot help you. That was it, end of visit. The most I got out of him was that there had been an outbreak of it and he was seeing alot of it. But the thing I remember the most, was the sound of psychic jail doors slamming shut. I was always the psychic one in school, the one that knew stuff before it happened. And when I got this diagnosis, I actually heard and felt this kind of jail door slam and shut. I don't think i ever told anyone about that, the day I got that diagnosis. Haven't found a way out of the jailcell in nineteen years.
I miss the days of being healthy and only having an occasional flu thing that never lasted more than a week or so. That was paradise compared to what I have now. What happened to those days? What happened to the days of going to the doc and actually getting help and whatever they gave you always seemed to work within two weeks and then you'd be fine? Really, what happened to that?
The Difference Between Periodically Sick and Chronically Ill
Blog entry posted by Carrigon, Feb 23, 2010.