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.
I am on disability and I am in pain 24/7. I try to pretend to be okay for my family has been the worst judge and jury, more than the public. They do not understand nor seem to care. I have severe back pain. Then 2 years or so later I was diagnosed with a brain aneurysm. I had to show them paperwork for them to believe me. It has been the most heartbreaking time in my life. I am alone, no support emotionally. I had the aneurysm removed. I could handle all this with some emotional support, yet being judged and almost kicked out of the family for my illness has taken me down quicker. I am not sick because I am depressed, however I do get depressed because my ability to work and contribute has been taken away. This is really hard on the self esteem especially when your family tells you how useless you are, not always by their words yet their actions speak very loudly. To anyone that has a disabled family member, they need you now more then ever, just to listen, or a hug, or just to say I still care about you and you are still important.
I am still crying after reading this because part of the reason for my divorce after 22 yrs of marriage was because”I was lazy” and my husband “didn’t want mykids to end up like me!!” That was the most hurtful thing I ever heard him say and he said it in front of my children!! He said that some people actually have to work for a living—–I have 3 kids and get less that $600 a month to pay rent and utilities and provide them the basics supplies for daily living!!! Why would anyone take that money instead of what they could make working!!! I used to work 2 jobs when I was younger—I was the ‘supermom’ I did everything for everyone and then after my 1st child 21 yrs ago some painful things started happening–tendonitis that spread all over my body—back and neck problems. Got worse after each subsequent child plus I have had over a dozen surgeries–most emergencies!! I learned not to trust my body so when I had appendicitis, I waited til the last minute to go to hospital because they had sent me home 3 times saying it was nothing!! When I had gallstones, I waited again, suffering in agony every night for 5 weeks until one got stuck in the tube to my liver—but they told me after 2 ER visits nothing was wrong–same with kidney stones——–doctors constantlly told me nothing showed up on their tests–until I was in ER in dire condition and rushed to surgery!!! Its terrible how women are treated in this country when we finally do have a reason for complaining——I saw how my husband got the royal treatment for any little thing—–I even had 2 minor heart attacks that went unnoticed until I moved to a city with 2 major heart centers accross the street from each other!!! Something needs to be changed in the attitudes of doctors towards women in this country—its is disgusting to me how I have been treated and all the UNNECESSARY pain I have endured because I figured I must be making too much of this!!! Sorry to vent so much but I’m fed up and not taking anymored—I finally have a great doctor who understands my health problems and also knows how I’ve been treated in the past–he also gives seminars to other doctors on patient relations/partnerships. He says the doc is your employee—fire a bad one!!! Fight for your care—-I could very well be dead if I hadn’t started fighting for myself—I pray other women will do the same!!!Thanks andGod bless you all!!! ~<3~
Like the disabled parking bays is the situation with disabled toilets. If people see someone coming out of one of those and they can walk, it is automatically assumed that they should not have used it, when in fact they are often the only toilet nearby which has a unit for getting rid of adult inco pads. Even if that’s not the case, it might be the only toilet which isn’t filthy, which has a door that locks, which has a seat that’s actually attached to the pan, and which isn’t used by youths as a hang-out space. (Also, you might want to wash your hands in between cleaning yourself and touching your clothes.)
All in all, people should mind their own business and not make assumptions about what people are doing and why.