This column article written in March, 2001.
Society Says: I can't see it, it can't be that bad. If it was really bad you'd have a wheelchair or green spots or something, it must be trivial.
Invisibly Disabled Person Replies: *cringing* Umm, oops, sorry ...
How easy it is to pick up society's idea that less visible means less bad!
I have a secret for you ...
... ready? ...
It's Not True! Invisible disabilities can be just as disabling, just as painful, just as symptomatic as visible disabilities. And even more so, in some cases.
A famous AIDS researcher, Dr Mark Loveless, researched the almost-always trivialized disease Chronic Fatigue Syndrome at one point along with his regular AIDS research. He found that on the Karnofsky Scale, which measures patients' ability to do things, that his severe CFS patients often measured lower than his AIDS patients who were in their last weeks of life! His CFS patients, an invisible trivialized disease, were often sicker than people with the very visible (HIV might be invisible but AIDS patients in their last weeks of life definitely look disabled) disease of AIDS.
The sad part is that even the very people with invisible disabilities buy into the myth that invisible means less bad. Most of them have been called "lazy" so many times they've internalized the idea that they could really do more if they tried. As a result, people with invisible disabilities often try to do things beyond their capabilities and actually make their conditions worse because of not trusting that they know their limits.
An example of this might be a Fibromyalgia patient not using the disabled parking bay he is eligible to use, because he knows he looks "okay" and feels guilty that people will stare and point or even yell at him if he uses the disabled parking bay. He therefore drives around to find a regular carpark. Eventually he finds one but has a 200 metre walk to the shopping centre, which is more than he can manage. He overdoes it walking back to the car and is left in bed, in severe pain, for four days as a result of his actions.
Is this society's fault? Can we blame society for the internalized feelings of guilt and "it must be laziness" that many people with invisible disabilities feel? Sure!
So if you're part of society, what can you do about this? Don't assume that your first impression of somebody is all there is to see. Just as people in wheelchairs can sometimes stand up, people who can walk sometimes can't walk far. Or people who can stand up may not be able to stand in a bank queue for ten minutes. Or people who look okay may have a heart condition, or a lung condition, or a whole-body condition, that means they can't do stuff the way you can.
If you're one of the people with invisible disabilities, what can you do about it? Try to throw off your explanation fatigue and explain to as many people as you can. Figure out a short, simple explanation of your condition(s) and try to give this out when people ask - it'll pretty soon become obvious if they seriously want to know more details or if they're happy with the short answer. If people really do want to know the long and detailed answer about what's wrong with you, then they should also be happy to wait until you're in a position where your disability lets you do it.
But the most important thing is not to lay a guilt trip on yourself about it. Don't think of the unfolded laundry, the high number of days you've had to take off work, or the fact you needed the disabled parking bay after all. These aren't things to feel guilty about! These are just things your disability causes or affects. Being disabled is not something to feel guilty about. And, as I stressed above, invisible disability is just as real as the visible kind.
Be gentle with yourself. Don't listen to society's bad messages. Believe what your body tells you. Hang in there.
