I Believe JRA Should Be Recognized By Society

Allie - North Port, Florida
Entered on December 18, 2008
Age Group: Under 18

I am Allie, and I’m 16. Through my lifetime, I have learned to accept my uniqueness and encourage others to be more unique. For when you stand out, you become noticed, and that is what gets you further in life. I believe that it is some form of ailment that makes you more of an individual with a better understanding of life. Why are you still living? Because of the sickness you may have, you appreciate life more, and it makes you a stronger person.

At age 4, I was diagnosed with Juvenile Rheumatoid Arthritis, or JRA. It is a disease, which affects the joints and the immune system. It’s extremely common amongst the elderly. However, society doesn’t recognize the fact that many children are diagnosed. It is one of the worst things a child could experience. My knee was the size of a softball. On an average day I would crawl, and on a “good day” I would limp. I didn’t have too happy of a childhood, but I made the best of it. I didn’t have much of a life. I was always either on bed rest or here and there at doctors’ appointments.

Even now, I don’t have too much of a life. The Arthritis ate at my immune system. So I get sick really easily, and when I get sick I get really sick. A common cold for a healthy person usually lasts a few days to a week and is mild. As for me, it lasts a whole lot longer and is two to three times as bad. The school used to have to warn me when there was a virus going around. They would call me mom, and she would keep me home. Something such as the flu can hit me twice as hard and can cause pneumonia, which can kill me knowing my uncle died from it. My uncle was healthy. So I would most likely die.

It eventually traveled throughout my whole body. I couldn’t do everyday activities in which “the normal ones” took for granted such as writing, turning sink faucets, and even giving thumbs up. I still can’t put my thumbs up. They want to perform a surgery to stretch my tendons, but I don’t want to go through with it because I don’t want my hands to get messed up even more because my immune system is so bad that I don’t heal correctly.

I always felt like I was an inconvenience to people when I would flare up. I felt like I was high maintenance to the people around me. Knowing they had to take care of me; knowing that I was an obstacle for them; that they had to slow down so that I could keep up with them. I was always called “the slow one”. I hated the fact that people had to write for me. I wanted to write my own papers. I used to get so frustrated. I still have some trouble, but I can handle it when I need to. It’s not as big of a deal to me now.

I hated elementary. The other students treated me as if I had AIDS (no offense to those of you who have it. I’m sure you know what I mean). They all thought I was contagious and that they were going to end up walking like me. They didn’t want to limp around and look retarded. I didn’t either. I still don’t think they had any right to treat me they way they did though. Every other day at recess they would throw me into pricker bushes. Then on top of that, this fugly fat kid threw me into a pole once, and I still have a small chip on my front tooth. Most of it’s filed down now, so it’s not noticeable. I hated being called “the girl with arthritis”. I would be walking down the hallways, and they would run from me. I was just as normal as them. I just had swollen joints.

With my immune system as bad as it is now, I’ve missed 30 days of school all with in the first semester. It made me sick how the assistant principal told me to just give up and stop coming to school. He called me a hypochondriac. How can I be a hypochondriac if I was in the hospital for a week with Pancreatitis? I have no clue how that one was caused, but it was dreadful.

In the same day, my one teacher told me that I was mentally ill in front of the whole class all because I asked if I could go to the nurse’s office for an ibuprofen due to arthritis pain. She told me that because I didn’t understand the work I couldn’t go. I even said something to her about how she doesn’t understand, and that she doesn’t know how it feels to have what I have. That’s when she called me mentally ill. Instead of people saying how messed up it was, they laughed. I was balling when I walked out.

I went to the assistant principle afterwards. “Yes, I was wrong, but I honestly cannot disagree with her. After all, you are a hypochondriac.” He told me, “Why do you bother coming to school if you are going to be supposedly sick all of the time, and miss so much school. All you’re doing is failing. Why can’t you just home school?” Basically he was just telling me to give up. My mom and I could’ve sued the school for both of them that day. It was pretty messed up.

Speaking of lawyers and lawsuits, social security doesn’t recognize JRA as a real disease. Therefore, JRA isn’t covered. We’ve tried several layers and wasted so much money trying to get SSI for my JRA, but no one would take our case. So we just gave up. I really wish it would be recognized, because I highly doubt I could keep a job due to being so sick so much that I’d be missing too much work, and I’d get fired.

I would love for it to be recognized by everyone. Not just SSI offices. I want the whole world to know how bad it really is, but how normal these children are. I want them to see that just because we may limp a little or do certain things differently to find ways to function doesn’t mean that we’re any different than they are. We’re not weird people. We’re just extremely special and unique. I would love for people to stop asking such ignorant questions. I want to put an end to all of this ignorance. If they were informed about it, they wouldn’t be so ignorant, and they would understand more.

That’s why I want to create a foundation named JRAF (Juvenile Rheumatoid Arthritis Foundation) to raise money to find a cure for this so that children won’t suffer anymore. I want to have Gino Giraffe as a mascot for JRAF. I want to run benefit shows and events for it too.

Though I wish I had never been diagnosed with this, in a way I’m kind of glad I have had it. It makes me appreciate life more, and it makes me a much stronger and kinder person. I can’t imagine whom I would be with out it. Would I be as brave? Would I be as determined as I am? Would I be as nice or would I be heartless? I ask myself these things all the time. Then I realize that I have my answers. I wouldn’t be as brave, determined or kind. I realize how unique and special it really makes me. I know it will always be a part of me, and I couldn’t picture myself with out it. I am Allie, I have JRA, and I accept myself for who I am.