Friday, September 17, 2010

Having one disability is not an insurance policy

This is Invisible Chronic Illness Week, a time to create awareness. This is a pet peeves post to be honest.

Many people that I run into think that once you have one disability, especially a visible one, somehow you shouldn't be able to get another one. Perhaps it is that life shouldn't be that unfair. Perhaps it is that they can't see how something that rare could happen twice to the same person. Perhaps it is that it makes it more likely that it could happen to them. I don't know.

As a child every problem I had was chalked up to blindness. It didn't matter that I was the clumsiest person in my class. I was even the only blind child who needed adaptive PE. Somehow, it was just blindness. So, paraprofessionals and professionals aren't immune from this either.

When I was in college, a friend of mine with a spinal cord injury told me that the majority of people with a SCI also have chronic pain. I was shocked to learn that. At the time, I didn't see myself as a person with chronic pain and learning that my smiling, laughing, joking friends also had to deal with incredible pain really boggled me. In this case the mechanism of pain “goes with” the disability or mechanism of injury. In other words, the pain and the paralysis are both caused by the spinal cord injury so it's a little easier for the average person to get their head around. Even then, as a person with a disabilty it never occurred to me.

People tend to think that being blind or having a spinal cord injury somehow means that nothing else will ever go wrong with your body unless it is related to that. Lupus, how's that related to your blindness? Oh, is that the real reason you're blind? I know people with spinal cord injuries, cerebral palsy, and congenital blindness who have developed auto-immune disorders or other chronic health problems that have nothing to do with the disability that they had first.

Oh, and having EDS or another invisible health condition isn't some magical talisman against motor vehicle, industrial, or other accidents than can result in visible disabilities such as SCI or blindness.

Speaking specifically of invisible conditions, I've noticed that disbelief tends to mount if I make the mistake of listing all my diagnoses. The person I'm talking to could believe that I have EDS if that's all I had. However, telling them I have EDS and asthma makes them wonder if I'm a hypochondriac or otherwise like being sick. It doesn't matter that quite possibly some of my conditions are related or commonly appear together. It doesn't matter that asthma is pretty darn common.

Most of the chronically ill people I know have a huge list of diagnoses. Some interrelated and some not. Our list of medications and supplements are usually even longer. Yes, we have doctors advising us on the treatments we use and pay attention when we make any change to our treatment plan. Asking us if our treatment plan is causing our health problems the first time you meet us when we're not paying you for a consultation is rude. It comes across to me as blaming me for my health problems or disbelieving that I even have them.

The specifics don't really matter. I used examples that came to mind or I'm familiar with. This seems to apply no matter what visible or invisible disabilities or health conditions a person may have. Each person is different and it is important to remember that. The more diagnoses a person has the more complex their situation. And it isn't a matter of A + B + C = My Health. Usually it looks more like A + (B x C)^3 = My Health. Yeah, that sucks but it is. Ignoring it will not make it go away.

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