But You Don’t LOOK Sick: Invisible Illnesses and the People Who Don’t Understand Them

I have an invisible illness. It’s called Chronic Regional Pain Syndrome. The disease is commonly referred to as RSD/CRPS. I speak out about it a lot, so most of my social group knows what it is. However, you wouldn’t be able to tell by just looking at me. Hence, an invisible illness.

Read the Huffington Post article below for another woman’s experience battling ignorance on this topic:

http://www.huffingtonpost.com/jennifer-campisano/when-today-said-i-was-not-bald-enough_b_5915628.html?ncid=fcbklnkushpmg00000046

I remember when my illness was at its worst. I was in and out of a wheelchair (I hated that thing, so I was desperate to walk). On the days I tried walking, people were always so surprised and very… vocal about it. I was going to class one day and had just parked my car when a guy in truck pulled over in front of me. He LITERALLY asked me, “How are you parking in a disabled spot if you’re walking? Are you faking it?” I was fuming. I calmly explained to him that I have a disease that causes me immense pain, but I still have the ability to use my legs. He obviously had never met anyone like this before, because he looked skeptical. “Trust me; I’m not faking it. I wish I was,” I told him.

It’s sad, but ignorance like this exists EVERYWHERE. It’s rampant. This phenomenon is further explained here.

It’s already hard for us. 73-year-old amputee Tom Hannah knows this struggle quite well.

For those of you who think you are doing a public service calling out the people who “look normal,” here’s a newsflash for you: you have absolutely no authority. For a fabulous explanation of this, check out this link.

Fighting Back

Some people put notes like these on cars that park in disabled spaces that do not have a disabled license plate or placard. Contrary to what some people seem to think, disabled spaces are NOT waiting spaces. Just the other day, I was on campus and a guy had parked his Mercedes Benz sideways across THREE DISABLED SPACES. Nah uh. Get out. Disabled people exist. We need those spaces, often a lot more than you know. A few steps, for me, can change my whole day. Don’t make me wait because you’re too lazy to go elsewhere.

Many people whine about the fines associated with these incidents. Let me repeat myself: DISABLED SPACES ARE NOT WAITING SPACES. Period. We take them seriously, and so does the law. Furthermore, NO; It is not okay to park in these spaces for a few minutes because you were “just running inside to grab something.” It doesn’t matter. Your quick errand is not more important than my health.

For more on invisible illnesses, check out http://www.butyoudontlooksick.com/about/

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2 thoughts on “But You Don’t LOOK Sick: Invisible Illnesses and the People Who Don’t Understand Them

  1. Your illness or disease may be invisible; However, the physical function of walking is very visible. How can a visible function like walking be severely limited yet show zero signs of limitation. If there is no sign of limitation how could a doctor even know if you are limited. The answer is, they can’t. Your walking must be severely limited in some way or there is no reason to get a permit.

    • You are wrong, actually. You need to read up on invisible disabilities.

      Getting a blue placard (blue= permanent condition; red= temporary, like a broken leg) requires medical approval, and be assured that this is not an easy process. One does not have to have walking problems to get one. Heart conditions and asthma also qualify someone for a blue placard – walking long distances can injure and even kill people with these conditions. It is not just foot or leg injuries that qualify people for these placards.

      In addition, invisible disabilities typically occur within the nervous system, as mine does (RSD/CRPS). Fibromyalgia is also an invisible disease in this manner. There are many more, but it would take hours to list them all. True – it is difficult to diagnose those with nervous disorders at the start (specifically mine – took doctors years to get it right), but we are getting better at it thanks to medical science.

      The reason you don’t see me limping in parking lots so much anymore is because it is embarrassing. I try really hard to look normal. It is so hurtful to have people stare at you and ask you if you’re “faking it.” It’s insulting. Trust me – if I didn’t have this disease, I’d be parking at the back (I used to love walking and running). But I SIMPLY CANNOT.

      Whether you think I’m full of shit or not is up to you. But I’m not going to sit here and try to fix your ignorance. Only you can do that.

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