1:13pm May 22, 2013

➸ In today's society, chronic illness is viewed as a personal failing

When I recently read the phrase, “I’m embarrassed to be sick,” it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling: this vague sense of social unease even with close friends, a reluctance to be seen or even talk to people–especially those that knew me before I became chronically ill.

At the age of 55, after a lifetime of seemingly unrelated physical complaints and inexplicable pains that kept worsening, I was finally diagnosed in 2012 with Ehlers-Danlos syndrome, a genetic flaw which leads to defective connective tissues. This results in chronic pain and many other health problems, as body parts aren’t held together properly, joints dislocate spontaneously, tissues stretch or tear, lose elasticity, and wear out early.

All of this hits uncomfortably close to home.

Also:

In our competitive society, chronic infirmity or illness is viewed as a personal failing rather than the random stroke of fate that it is. If my pain and disability were temporary, I would get sympathy and accommodation, but incurable suffering makes most people uncomfortable. They become impatient and distant, and I detect an undercurrent of belief that I must have done something to deserve this – something they can avoid doing.

If all the people not yet affected by chronic illness acknowledged all the undeserved pain in this world, they would be forced to confront their own vulnerability to the same forces. Instead, we all prefer to believe we have the power to prevent such disasters in our own lives. Sometimes I even catch myself thinking, “If you’re so smart, why did you let this happen to you?”

Yes totally that.

I get so sick of the smugness people have about their own health. Like they did something to cause their health relative to those of us who are sick. Like people with chronic illness just didn’t eat our Wheaties, as Billy Golfus once put it.

I understand it is a defense against a terror of becoming ill. But it hurts people who actually are ill. So I start to lose sympathy with that terror.

Someone once pointed out that things haven’t changed much since a time when most people saw illness from a religious perspective, as a sign that the ill person had sinned in some awful way and was being punished. People still treat illness as just as much a moral failing as back then, just usually from a more secular point of view. That’s one of the reason fat people are so hated, it’s all tied in with the view that fat is unhealthy and fat is caused by the sin of gluttony and we are causing our own unhealthiness so we deserve whatever crap we get from society, even when that crap leads to our death. There’s a reason that people use health to justify their hateful behavior towards us. Because ill health (real or presumed) is still a sign of sin, and sinners are fair game.

Meanwhile healthy people are so often congratulating themselves. Taking credit for their own health. When much of their health has to do more with genetics and environment than their own actions.

A lot of the alternative medicine community, which is very popular for some reason, puts forth the idea that you can will yourself healthy. Some practitioners even go so far as saying that every disease is a sign of some psychological conflict that you can get rid of with positive thinking. Cancer is blamed on a certain personality type, the cancer personality.

It’s all a mess. I have to go. But I could write more for ages.

Notes: