Overcoming Juvenile Arthritis: Ali’s Story
Sixteen years ago, I found myself at boarding school, sitting on the edge of the pool, staring at my swollen knee. I hadn't injured it in the water, and confusion painted my face. The pain was intense, and I needed help just to get back to my dorm. Luckily, my mom was in town visiting and got me to the children's hospital in Hartford, Connecticut, the next day.
As the doctor drained my knee for the first time, we both frowned. The pain was less than expected, thanks to some loopy pills—thank you, children's hospital! As he drained the fluid, he said, “We can’t jump to conclusions, but based on the fluid's color, this might be Juvenile Rheumatoid Arthritis.” Now known as Juvenile Idiopathic Arthritis, meaning its cause is unknown. My mom questioned his thinking since it was based on the fluid's color, but I was too out of it to remember much of that day.
The doctor was right. Three months later, I woke up from my first arthroscopic knee surgery, hearing the confirmation that my joint resembled that of a sixty-five-year-old. Not exactly what you want to hear right after your sweet sixteen.
In my sixteen-year-old mind, I thought I was cured after the surgery.
It was 2009; we had the internet, but it wasn't like it is today. I didn’t have social media connections to others my age with JIA, nor did I care to find them. After the surgery, I was doing okay. I had to take steroids and get my knee drained once more, but no new JIA drugs were needed. So, I decided to forget the whole thing. Back at school, I told everyone I just had an injury. Only my best friend knew about my chronic illness. I wanted to forget I had a lifelong diagnosis, but that was easier said than done.
That first semester back, I skipped sports for physical therapy. PT was easy, a huge win for a teen! I had more time with friends instead of spending hours in sports. But winter came, and I was back in the pool.
Swimming was my sport. I'd been to two junior Olympics and aimed for a college scholarship. I wasn’t a mini Michael Phelps, but I was the second-best breaststroker on the team, just behind my friend Courtney. At the last nationals, I was only a second behind her.
With JIA and a surgery under my belt, swimming wasn’t the same. My knee felt different. I felt different. My swim times felt different. They worsened, and I felt my coach had lost hope in me. I don’t remember if I even told him about my diagnosis. He passed away, so I can’t ask him now. Rest in peace, Mr. Lowe. We miss you.
Why did I lie about my diagnosis?
Why did I tell my swim buddies it was just an “injury”?
Maybe I was trying to convince myself I didn’t have a lifelong illness. I didn’t know anything about being chronically ill, nor did I know anyone with an illness. I was, and still am, the only one in my family with JIA. It felt incredibly lonely.
I wish a speaker had come to our school to talk about chronic illness, disabilities, and invisible illnesses. I wouldn't have felt like such an outcast or felt the need to lie. I didn’t want pity, and I didn’t know how to explain that my joints were like those of grandparents, even though I was 16! If someone had come to our school, I might have had the courage to tell at least my close friends about my JIA.
If I could go back in time and be the speaker I needed, I would say this: There is nothing to be ashamed of if you have a chronic illness or disability, visible or invisible. It’s out of your control, and you should be proud of yourself for being strong enough to deal with it. You handle all the stresses of being a teenager, on top of being in pain. That’s strong as hell.
Second, I highly encourage you to connect with someone your age with the same diagnosis. Even if they aren’t nearby, social media is a great tool. Connecting with someone who understands can make you feel less alone and be there when you’re down. They will understand. Sometimes we just need to vent, and it helps to vent to someone who can relate. On top of that, surround yourself with a support system.
Let your friends know what you need and when you need it. In return you can help them as well! Be there for each other. There’s nothing like a friend lifting you up out of a funk. And you being there for them to do the same. Friendships are what got me out of my depression dealing with JIA.
Third, it’s not going to be easy, but you will come out the other side. There will be hard days and somewhat good days. Fight for those good days and don’t lose hope. When you’re in a flare or can’t continue a sport due to your illness, keep fighting. I gave up fitness completely when I realized I wasn’t the swimmer I once was.
But now, I’m a personal trainer BECAUSE of my illness. I now train others with a chronic illness like JIA proving that we can move our bodies in a fun safe way regardless of limitations. In high school, I never thought I’d do anything remotely similar to physical activity as a career.
Lastly, don’t hold back. Feel your emotions, cry when you need to, scream into a pillow if you must. It’s important to release those feelings. Practice self-care and give your body what it needs in those moments.
Then, get back up or sit up in your chair if you’re having a leg flare like me, give your friend or yourself a high five, and slay the day. You are incredibly strong and I promise this: better days are ahead.
