The Unedited Truth About Living With An Invisible Disability

Almost ten years ago, my integrity was questioned regarding my chronic illness and disability for the first time. I was about four years into my diagnosis with rheumatoid arthritis, and despite the dark cloud that loomed over my head on a daily basis, I felt on top of the world.

Life was looking up, I was in a state of equilibrium. Those with chronic illness and disability can probably attest to the fact that we live life with a constant ebb and flow, and when things are going as good as it can get, it is truly a gift. I was on medication to treat my condition. I was feeling good. I was attending college full-time downtown in the city I live in, working part time as an intern and enjoying life with my family and friends.

At that time if I would go out and talk to someone who didn’t know me, they would’ve never guessed chronic illness or disability was part of my life. The only people who truly knew the extent of my issues were my immediate family and a few chosen close friends I felt comfortable enough to open up to at the time.

So when a local police officer rang my doorbell due to someone calling the station to complain that a girl was unlawfully using a disability placard to park in front of the train station, a part of me wasn’t surprised. Looks can be deceiving, as a lot of things can be covered up by clothes. That’s why the chronic illness I have is called an invisible illness.

I remember telling the police officer, “I am the one who uses the placard and I have rheumatoid arthritis. It’s an autoimmune disease.” After asking if there was any other information he needed, he stared back and didn’t say anything, other than there was a complaint made and he had to come to check. It was protocol. Once he left I felt angry, not at him because he seemed nice and understanding, but at the whole principle of the matter. I had already gone through so much and I wasn’t even 21.

To this day, I don’t know who called the police on me that morning, nor do I care. What I cared about at the time was having to explain myself to a police officer. It is no one’s business why I use a placard. I can’t blame the person who thought they were telling on me, but I can blame society for not being educated on disability. The symbol on the placard doesn’t fit the description of every person who uses it, and that’s the problem. Some people assume if you don’t have a wheelchair, cane or limp that you’re not disabled.

The morning of the incident, I almost missed my train because I was in pain. I took two ibuprofen and an almost two-hour-long shower to warm up my body, along with stretches to even get moving for the day. This was a daily routine for me; I was lucky to catch a break on some days. No one sees the preparation it takes to look put-together, they see the cleaned-up part.

What the person couldn’t see when I ran up three stairs to get onto the platform with my backpack was that under my coat, my elbow and hands showed damage from RA. Just because I went up the stairs quickly didn’t mean there wasn’t searing pain in my feet or swelling and stiffness in my hands that made it hard to turn the key to my car without a device given to me by my occupational therapist. This would only be noticeable to someone if it was pointed out by me.

Not just anyone can get a placard; it’s a process that involves your doctor signing a form confirming that their patient does indeed have a condition that requires it. Then the form is sent to your Secretary of State to process before one is mailed to you. The car I was using that day was registered under the placard number, so when the police officer typed in the information my name came up. It’s as if that information alone wasn’t believable.

I’ve never been embarrassed to use a placard, and whenever people have stared at me as if I am doing something wrong, I look right past them. The truth is though, I wouldn’t want to use this if I didn’t need to. I didn’t get one right away because I thought I could handle it, only to be wrong — I needed assistance.

I miss not being able to keep up with people. I often get anxious when going somewhere, not knowing for sure if there is going to be an open spot for me to park. If there isn’t, I usually have to get dropped off in the front entrance of the place I’m going to. If that’s not an option, I may leave if I’m too tired or in pain to walk far that day. Even if I do walk far on a good day, I often pay for it the next day. Chronic illness and disability can find ways to knock you down right when you think you got it all together. It makes life more complicated because of the tedious strategic planning involved.

At the end of the day though, I’m grateful those of us with disabilities, visible or invisible, have access to a placard if needed. Most importantly, those closet to me have never made me feel “less than” for using a placard — and that is all that matters in the end.