Young and Inflamed: My Experience With Juvenile Idiopathic Arthritis

I’m pretty lucky when I think about my situation. I’ve never had a flare-up so bad I’ve had to go to the hospital. I can go away to school without much fear or worry. I can (for the most part) be a “normal” teenager. But juvenile idiopathic arthritis (JIA) is still a huge part of me.

At 15 years old, I started limping. I’ve since learned, at 18, that limping may be a first sign of JIA. If only we’d known that back then, maybe I could’ve avoided three confusing diagnoses. Maybe I would’ve been able to control the pain. Maybe I would’ve been able to increase my range of motion in my arms, leg and jaw. Maybe seems to be an overused word in my vocabulary since my diagnosis.

Medications have worked their way into my life as well. Celebrex, methotrexate, biologics and folic acid, words that once seemed like gibberish, are common in a sentence for me nowadays. But it’s not the medications I really pay attention to, more the side effects. In my experience, there’s often a sentence of the information sheets of the medications that’s similar to this: Remember, if your doctor has prescribed you this, the benefits most likely outweigh the side effects. That sentence is the reason I am not fully living like a “normal” teenager. Other teenagers might worry about how they did on a test, or if they’ll make a team. And though I have those worries, I also have to worry about if my hair will thin out, if I’ll be too drained or nauseous to do something, as well as other things.

It took time, but I have finally come to accept this disease — to accept that yes, I have JIA as a disease, and no, it will never fully go away, but I can choose to survive with it or let it take over. I, along with 24,000 other children and teenagers in Canada, will, and have to, take control of our bodies back. This is what we have to work with, and this is what we will work with.

Naomi on a merry-go-round

Editor’s note: This post is based on an individual’s experience and should not be taken as medical advice. Please reach out to a medical professional with any questions or concerns you might have. 

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Arthritis

Why I Think It's Important for Every Chronic Illness Story to Be Heard

Because I blog about living with a chronic illness, earlier this year I was asked to be an ambassador for our local Walk to Fight Arthritis in St. John’s, Newfoundland & Labrador. As an ambassador, I spent a lot of time preparing for television and radio interviews to talk about how arthritis affects people and [...]

What I Should Have Told the Reporter Who Asked, ‘What Is Arthritis to You?’

A news reporter asked me on air, “What is arthritis to you?” Silence. I fought to get the words out, and I struggled to come up with an answer to such a blunt question. All I managed to say was, “It’s my life…” We sat there in silence for 30 seconds as he waited for [...]

A Young Mother's Guide to Walkers

I’ve had rheumatoid arthritis for a while. It was kind of dormant when I was pregnant and when my babies were little, but since my 2-year-old was about 6 months old, my health has been pretty steadily in decline. Now, I’m on a lot of different medications, and my doctor is trying as hard as [...]

To the People Who Think My Pain Is 'No Big Deal'

Many conditions of chronic illnesses are often glossed over because they do not sound that painful or difficult to deal with, and the person may even look well. Are they just being “lazy” and “faking it”? Prior to experiencing these symptoms for myself, I might have been guilty of certain ignorant and unkind thoughts within [...]