What It’s Like to Live with an Invisible Disability

It finally happened. 

I had finally gotten used to the outright staring whenever I would park my car, and how most people would not so quietly mutter under their breath. I was used to the offhand comments and insensitive jokes. As someone with an invisible disability, I am used to being judged. People look and point when I pull into a handicap parking space and say “she looks like she can walk just fine. I wonder what she faked to get a handicap placard.” Others look at me, a healthy passing twenty-year-old, and do not understand what I feel with each step I take. 

I have Rheumatoid Arthritis. I only received my diagnosis when I was seventeen but I have suffered from this condition since I was eleven years old. One day I just woke up and could not move my wrists. I went from participating in horseback riding, gymnastics, soccer, tennis, basketball, swimming, and more to barely being able to hold a pencil. My parents had to open water bottles for me because I no longer had the strength to fully twist off the cap. When I say that it was devastating, I mean it. Every passion and dream I had ever had was crushed when I could not even get out of bed without nearly being in tears from the pain. 

Every single joint in my body can pop out of place and pops on the regular. Now when I say pop, I really mean POP. Like SNAP CRACKLE and POP level noises. I was stretching the other day and my entire spine cracked as I turned and the person next to me told me it sounded like I had cracked multiple glow sticks. It hurt so bad that I was nearly in tears, but I simply faked a laugh and pretended that I had not heard that joke before. I have heard it twenty-seven times this semester alone (I wish I was joking). If I do not laugh then I will most certainly start crying from the pain, so I usually just laugh along to jokes that are made at my expense because “at least you don’t have it that bad.” 

I myself would often joke last year that at least I could get a decent parking space on campus because of my parking placard; I was told this often enough by others that I figured if I told the joke first it would not bother me as much. I was wrong. On numerous occasions, I have been asked to drive to wherever a group of my friends wants to go, not for my company, but because we could park closer to the entrance. No one has ever come up to my car and asked me why I park in a handicap space because not only would that be insensitive, but because of my bright red handicap placard. It is an embarrassing beacon on my car’s mirror that says “I’M ALLOWED TO BE HERE. I AM DISABLED. I’M ALLOWED.” 

Now I know what people might say, that this sounds dramatic and that the handicap placard is not really that bad. It’s not. I appreciate that I have the placard and that I have access to parking that is closer to my classes, which means less strain on my joints when I have to walk halfway across campus multiple times a day for my classes. 

So you may be wondering: what finally happened? As many students at Texas A&M know, most of our buildings are on the older side and have elevators with limited access. Heldenfels Hall is a prime example of this. Having limited access means that there is a giant yellow sign in bold print on the elevator door that says “faculty and handicap only.” I get it. The elevators cannot handle constant use, so the university limits who is allowed to use them. That makes sense. What does not make sense is when people decide who is handicapped based on physical appearance, which is unfortunately what happened to me this week. 

A female faculty member approached the elevator at the same time as me and stared at me while she pressed the buttons for floors three and four. I have a chemistry lab on the fourth floor, so I dread taking the stairs because I am physically exhausted by the time I finally finish getting to the fourth floor. What I dread even more than taking the stairs is using the elevator. I get that this seems odd, and I know that disability services told me that I am one hundred percent allowed to use any of the elevators on campus if need be, but I have always been scared about being confronted about my disability. 

So then this woman stared the entire way to the third floor and when I did not get off there she questioned me. She asked if I was a student, and when I said yes, her tone changed from curious to accusatory as she asked,  “Are you even allowed to be here right now?” I turned to the giant yellow sign and pointed to the word ‘handicap.” With a tired smile, I simply said, “Yes. I have a disability, it just is not visible.” The woman turned back to the door and ignored me as we approached the fourth floor, seemingly satisfied. Holding back tears, I walked over to my lab and saw her cringe in my peripheral vision when my knees popped as I exited the elevator.       

I wish I could have a wonderful conclusion about how this situation enlightened this woman about disabilities and how she learned that not all disabilities are physical, nor are they all visibly obvious. Even more than that, I wish that I had some closure to assure me that this was a one-time occurrence and that I will not be questioned about my disability again. It feels like the only solution is for me to grab my bright red handicap placard and carry it around with me as a beacon to point out my disability. 

During my freshman year of college, I remember going with a friend to one of the football games and the boy next to us was sitting because he also had arthritis and could not physically handle standing the entire game. He felt forced to bring his handicap placard and wear it; he told me it was the only way people would leave him alone because they did not understand or care that his disability was not visible but was just as debilitating a clearly visible one. 

I felt the need to mention these two experiences because it is an all too common trend that people with invisible disabilities experience every day. Whether it is being questioned by strangers on the validity of our illnesses or the awkward stares and rude comments, it all is horribly presumptuous and painful to hear. Please remember to be kind, as we never fully know other’s circumstances and hardships.         

• Accessibility
• chronic illness
• disability
• embarrassment
• empathy
• health
• invisible illness
• mindfulness