As a person who has been able-bodied my whole life, I thought I was having one of those nightmares where you can’t move or run away. It took me half an hour to realize that I was, in fact, awake. This was real.
It was the spring of my sophomore year of college when I contracted Löfgren syndrome, an acute autoimmune disease that attacked the fat cells in my joints, particularly my knees. My legs swelled up like tree trunks and I broke out in nasty red bumps that felt hot to the touch. Every morning, I would wake up with legs so stiff and pained that I would only gain the strength to walk after several hours of popping pain medicine and stretching.
Even after that, it was extremely difficult and excruciating. I walked slowly and stiffly, teeth clenching with every tiny step.
Fortunately, it was curable, but I would not know that for three weeks. That’s how long it took to get an accurate diagnosis. For those three weeks, I believed I would live with a physical disability for the rest of my life.
I visited doctor after doctor and grew more fearful every time they told me they had no idea what was wrong with me. (There are few things in life scarier than when your doctor is just as baffled about your condition as you are.) One of the doctors tested me for lupus. Most of them were within an inch of certain I had rheumatoid arthritis.
When I got the soft diagnosis, I thought the doctor was kidding. 19-year-olds don’t get arthritis, I thought. She assured me that in fact, they can. It’s also degenerative. With quite a lot of life ahead of me, that left a lot of time for the erosion of my bones and disfiguration of my joints. I left the office and burst into body-wracking sobs in the middle of the suburban shopping center. I wondered how different my life would now be from how I had planned it.
The next day, the disease invaded my fingers and knuckles. As I used the force of my entire body to open a tiny bottle of pain pills, I questioned how I would be able to achieve my dream of being a journalist if I could no longer hold a pencil. I had never been much of an athlete, but I found myself regretting all the miles I had not run.
Even the smallest, pettiest details were hard to come to terms with. I applied thick layers of concealer to the red bumps on my legs before my sorority formal. I could not wear high heels that night. One particularly rough morning when I realized I’d left my medicine on the dresser across the room, I had to call a friend who walked 10 minutes just to walk me 10 feet. My loved ones were endlessly obliging, but it was hard not to feel like a burden.
I got almost all C's and D's in my classes that semester because I just could not get out of bed a lot of mornings. In retrospect, I know this is ridiculous -- I had a medically excused absence, after all. But, out of fear that my professors would think I was lying or exaggerating about my condition, I did not tell them the truth. It was emotionally draining to explain it so many times, especially because I really didn’t know what was wrong with me.
There was a great deal of comfort and validation that came with getting the official diagnosis. When I was finally able to put a name to my illness, I exhaled three weeks worth of fear. I wept tears of relief because I knew I would soon be better again.
Like most able-bodied people, I didn’t think about my privilege a great deal before it was taken from me. I’ve passive-aggressively lapped slow walkers more times than I can count. I’ve overlooked the existence of invisible disabilities, assuming that all people with physical disabilities needed a wheelchair or crutches to get around. I have definitely called a person with a disability “inspiring” for no other reason than that they had a disability, and I’ve rolled my eyes when a person took the elevator only one floor.
Suddenly, I was that person taking the elevator one floor. I felt the resentful, rolling eyes of fellow elevator passengers burning into the back of my neck. I said sorry a few too many times. There’s not much time in an elevator to explain that you have a mysterious, debilitating joint condition.
I am absolutely, 100% not a disabled person. I experienced a few of the challenges that the disabled community faces every day of their lives. But, after a month, I was back to walking with ease like I had before.
I will never have limitations imposed upon me as to what restaurants, stores and concert venues are accessible. I will never know what it’s like to be passed over for a job for simply “looking incapable” of doing the work. I will never have to decide what’s worse -- being stared at incessantly, or being treated like I’m invisible. I will never, ever be institutionally oppressed for what my body can or cannot do.
I learned a lot by having Löfgren syndrome. It taught me how strong and resilient people with disabilities can be, but more importantly, it taught me that people with disabilities don’t want my pity -- they want respect and solidarity, just like any other person does.
The next time you feel yourself getting annoyed because someone got on the elevator and hit the button for the second floor, remember that you do not know their story. Empathy is non-negotiable in scenarios such as these, as well as simply as a tenet of being a decent human being.
And anyway, if you're honest with yourself, you probably have time to ride the elevator that one extra floor.