chronic illness

At 20 I was healthy. Became sick with headaches, backackes, stomach problems, and severe, unremitting fatigue.
I'm 30 now. It never left, but I've grown used to it, so to speak. I live now by pretending - since I've found the majority of the human population to be incapable of treating "sick" people as if such people are equal human beings and not human waste, I no longer tell anyone I'm sick at all. I pretend.
For three years I was bedbound. Hard to pretend much then. You learn a lot about the interior of a bedroom - and due to the poverty that being unable to work brings, a bedroom itself was hard to come by.
Those three years changed me in ways that no one who knows me, including my family, will ever understand. I lived with a roommate who was primarily my only human contact much of the time, aside from friends online.

You learn certain things from being sick. Essential things about survival. You learn that there are many aspects of life which, though otherwise may seem important, are not necessary for survival. You learn to live in isolation when you're bedbound. You learn to live without enough money for more than bare survival (and sometimes without that too). You learn to do whatever it is that you have to do to get by. You learn to forget about hopes and dreams - in so far as one can forget the life that they previously thought they'd be living. You learn to forgive people who stop remembering to be your friend or your family when you no longer appear to be someone they can relate to. You learn that retaining dignity without the ability to contribute to society through paid labor, in our society, is very difficult. You learn that when one reaches a certain age with no husband, child, or career, she is essentially looked upon as worthless to society.

And you learn that what matters most at the end of the day is whether or not you let all of this convince you that your life is worthless, or whether you can retain some dignity, some self respect, and some desire to get a normal life back as much as possible. You learn to fight for survival. It's a fight most people in that circumstance don't get much credit for. Nobody hands you some kind of award for getting a part time job again, or managing to do your own shopping, or getting the income together for a rented room since that's all a person on disability benefits can afford to live in as it pays far below the poverty level of the United States. Rather, people look down on you for not having a career, not being married, not having a nice car or house or wahtever the case may be, and most importantly in this is that they look down on you for being sick. Often, as denial that such health problems could occur to them as well is essential for their own survival, they refuse to believe you are sick - particularlly if you're not in a wheelchair. Often they also blame you for the fact that you are sick, if they admit that you are in the first place. I've found that being seriously ill in this society requires lying in order to even find a place to live, because, illegal or not, people refuse to rent me apartments if they find out I receive disability benefits. Similarly I would never have dated anyone at all in recent years if the guys I went out with knew I was sick, and in fact, when they did find out, the relationships did not last. I cannot maintain employment if my employers know that I am doing the type of work I am doing only because it is not too physically demanding for me to do it.

In the end, what I myself wish more than anything is that I had simply been able to convince myself I was not sick too. Autoimmune diseases like Chronic Fatigue Immune Dysfunction Syndrome, Fibromyalgia (a related condition), and Rheumatoid Arthritis are real illnesses and not easy to ignore.

At the present time, when I'm not working and not in bed, what I am doing is ignoring them as much as possible. But they never leave. R.A. leads to crippling, and this is in my future, most likely. It's not a future that I feel I should have to face, given a large number of serious difficulties I've already faced on my own, and the fact that I really never had the opportuntiy to have much of a life.

I am a Scientologist, so I beleive in other lives. I believe that there are many problems with the medical establishment, particularly the psychiatric community. More than anything, I believe there is widespread ignorance regarding illnesses that can become disabiling, and that particularly there is widespread mistreatment of people who are discarded from the population like yesterday's garbage the day that they are too sick to be able to keep making the money they need at a job they most likely really want to keep. This is a pathetic commentary in the year 2005. Then again, Hitler sent people with disabilities to the gas chambers, and that was not so long ago.