Dear People Who Teased Me Growing Up,
Yes, I’m a 21-year-old woman who has to ask someone to open a soda bottle. No, I can’t carry something heavy if I can’t carry it on my forearms. Yes, it may take me longer to get things done than “normal” people. No, I can’t run 100 meters without getting slightly winded or pain in my ankles.
I am not weak. I am not pathetic.
When I was young, I was diagnosed with juvenile rheumatoid arthritis, which mostly affects children under 16. JRA is an autoimmune illness, meaning that the body accidentally attacks healthy body tissue, focusing on the joints. Every few months, I had to go to New England Medical Center for testing and treatment. I knew what phlebotomy was when I was five years old. The word alone made me go into hysterics.
Imagine: at five years old, you think that you’re just like everyone else. Starting to practice gymnastics and falling head over heels for it. Every day you have practice, it’s the highlight of your day. But one day, your ankles hurt. You see a doctor, have tests runs, and then they tell you. You have to quit gymnastics because you can’t land on both ankles with significant pressure, especially at the same time. You have to sit on the sidelines and watch your older sister play the sport you love, and you can’t fully comprehend why.
Fast-forward 10 years. It’s been four years since the doctor said you were in the clear, but your joints still can’t keep up. You can’t run without getting winded, or your ankle rolling under the pressure. Your gym teacher yells at you in front of your entire class, calling you lazy for “not even trying” to run a mile. You go home in tears, wondering why your joints don’t work properly, even though you were told you were in the clear.
Six years later, you’re afraid to order a beer when you go out with friends when you’re perfectly legal because you’re too embarrassed that you can’t open a twist off cap by yourself. I would rather sit there with water than waste money on a drink I can’t open.
When people look at me, they don’t think disabled or hindered. They see a girl they think should be able to do everything any other girl her age could, and is just being lazy when she says it hurts. I’ve been called lazy, a liar, or told to stop exaggerating and do it. As a teenager, I admit that I may have used it to my advantage, but as an adult? I wouldn’t dream of it. In fact, I hate when I have to say no to helping someone else, or ask for some sort of help myself. I’ve gotten used to people laughing at me when I almost drop something because of its weight.
It’s only recently that I’ve accepted the fact that it happened to me and I have to live with it and it’s on me to better myself. I have to do what I can to rebuild the muscles that are underdeveloped, and to get my mobility back. It’s a struggle I’ve been fighting for over 15 years. It is not your place, however, to publicly make a comment or make a face when I say I can’t do something. I try my hardest to do what I can, so when I say I can’t do it, I can’t physically do it.
Arthritis is not an excuse, but an incentive. An incentive to go above and beyond because that’s how we keep up with expected normalcy. To me, it’s not about "can’t" anymore. It’s about doing.
To those of you who made fun of me, and continue to: game on.
Sincerely,
The Girl Who Won't Stay Quiet Anymore
