According to the American College of Rheumatology, 1 in every 1,000 children develop chronic arthritis. I am a representation of that statistic. I was among the 300,00 children that was diagnosed with JRA when I was nine years old. I say “was” because now being in my twenties, I am no longer classified as a juvenile and my condition is known as rheumatoid arthritis. While I was bullied for being overweight (you can read that story here), imagine telling a bunch of fourth graders you couldn’t go out to recess because you have arthritis and couldn’t be exposed to colder temperatures or you’d have a flare up. Yeah – no one believed me, but little did my classmates know one night I woke up and couldn’t feel my legs.
I definitely gave my parents a fright during these years, and they were recently divorced so none of this diagnosis was easy on my family. I woke up in the middle of the night and needed to go to the bathroom, except when I threw the covers off of me, I couldn’t feel or move my legs. From the waist down I was unable to move. I started screaming for my mom and crying out of fear. Imagine being nine years old and not having function of your legs – it was scary. My mom picked me up, put me in the car, called my dad, and we were off to the emergency room. This was the first trip of many to come…
With knees and ankles swollen to be the size of tennis balls, this was not normal for any child to experience. Each time I was taken to the ER, they would do a panel of bloodwork and test me for Lupus and Lyme disease. Each time the test coming back negative. Quite a few doctors told my parents this was a side effect of growing pains… except I wasn’t growing. In fact, after I was examined at Boston Children’s Hospital and finally diagnosed with JRA, it was explained to my parents that my growth plates had been stunted due to the immense inflammation throughout my body, and I was told I wouldn’t grow any taller than I was. We were at Boston Children’s Hospital for 8 hours the day I was diagnosed, running tests, ultrasounds, you name it. We left there with answers, but the hardest part was yet to come.
Although I had a care planned mapped out for me, it was hard not to feel like I was normal. I was ten years old with a prescription for Naproxen that was at a dosage many middle-aged adults never see, going to the chiropractor (being the old child there/sharing a waiting room with my history teacher), and doing water therapy in a heated pool. I was by no means “normal”. Many times, I would sit with my dad and cry saying I wanted to be a normal kid when I would see others sledding and playing outside in the snow. He would look at me and say, “If I could take away the pain kid, I would give it to myself so you wouldn’t have to suffer.” I saw my dad cry a lot during these times, my mom too, it was exceptionally hard on all of us.
There were many times I couldn’t walk due to how bad my knees and hips were, so my dad would carry me a lot, or if I was with my mom, we would resort to a wheelchair. I’m sure you’re wondering how someone with such a severe condition ended up being able to run – well there came a point where I had to change my whole life. After years and years of being on Naproxen, the number of flare ups I would have slightly diminished. In high school the only time I would have flare ups was if I spent too much time outside in the cold/rain. During one of my softball practices I said how it was starting to rain/I couldn’t be outside because of my arthritis, and the girl in center field with me scoffed saying “you can’t have arthritis, we’re 15 years old” … But this is a remark I was used to hearing whenever I would discuss my condition with peers, or even some adults.
By the time I got to college, I was having a hard time walking campus. Having fifteen minutes to get across campus to my next class in all types of weather conditions was taking a toll on my body. The flare ups started happening again, and upon a visit to my rheumatologist, he suggested trying to lose some weight. The excess weight I was carrying around on my joints was causing me a lot of discomfort and inflammation, this on top of being bullied for my weight was what got me going to the gym.
Exercising at first was difficult for me. I couldn’t even go on the stationary bike at the YMCA for more than 10 minutes without my knees hurting. I was resilient as hell though because I was determined to figure out a fitness regimen that would work for me. Everyday when I went to the gym I would try and bike for a little longer each time. I started doing yoga classes three times a week, and eventually I got brave enough to go into the weight room. Believe it or not, this is where I saw the most results in regard to my physique and inflammation.
I began working with a trainer and within three years I was taught how to properly strength train, lost 75lbs, and competed in three powerlifting meets. The first competition my mom went to and saw me squat 240lbs, she was in the front row crying – mainly out of fear/disbelief. Once you see your child almost paralyzed, and then put a bar on their back with weight, you kind of get nervous. But this sport helped increase my mobility and made me stronger.
While I would have minor flare ups from time to time throughout those three years, it was never as painful as it was when I was a child and I believe it’s due to the fact I lost a lot of weight/was overall healthier. Although the bursitis in my elbows was excessive at one point and required me to get two cortisone shots, I was doing pretty well. I hadn’t had a flare up in my knees or hips for two years, so I thought, why not give running a chance? Each time my gym class had done that unit, I would get a note excusing me from it – probably the only “perk” of having JRA at the time. But I wanted to be challenged and try something new.
The first untrained mile I had ever ran took me 18:57 (thank you Map My Run for keeping records). With the help of my coach at the time, we increased the number of times I was running a week, I learned how to properly run/breathe, and each run got better. I FINALLY achieved a 6:45 mile mid-summer of 2018 and I was beyond ecstatic. Then I started progressively going on longer, and longer runs. The first 5k I ran (indoors) was 32:37, being the competitive athlete, I am… I wanted to sign up for a race and beat that time. So that’s exactly what I did.
Last June I ran my first “real” 5k and finished with a 27:53 time. It was by far, the hardest and most challenging thing I have ever trained for – but I can’t tell you how proud I still am because of it! Once I crossed the finish line, I cried. Flashbacks of the times I was being wheeled around by mom, and that tragic night were rushing through my brain – and I, ME, just ran THAT?! I am still astonished to this day.
My advice for anyone who reads this who may have JRA, is that you’re not alone. There was many times I felt that way because I didn’t know anyone with my condition – but I am here for you. I sympathize with feeling alienated and frustrated by your body “betraying” you this way, and I am here to listen if you need me. JRA has affected me in many ways, but I only know what it’s like to grow up with this disease – and I would not have it any other way.
For anyone reading this that may want to challenge themselves and start running too: start small. Don’t push yourself too hard, make sure you learn proper running form, and find supportive footwear.