What It's Really Like to Live With JIA
Juvenile idiopathic arthritis brings physical and emotional challenges to young people. They want you to know there are rewards, too.by Leslie Goldman Health Writer
Ask most adults if they would ever go through being a teenager again—without any of their hard-won wisdom, that is—and the vast majority would shirk (or possibly even shriek) at the thought. The emotional highs and lows. The insecurities. The relentless peer pressure. Like, no.
For those living with juvenile idiopathic arthritis (JIA), there’s an added layer of stress to all that angst, thanks to juggling symptoms like joint pain, swelling, stiffness, and fatigue with what can feel like never-ending doctors’ appointments and medication regimens, too.
Nearly 300,000 kids and teenagers in the U.S. have JIA, the most common type of arthritis in children. It’s widely considered to be an autoimmune disorder, meaning the body’s immune system mistakenly attacks itself—in this case, the joints or the tissue lining that surrounds the joints. JIA can be unpredictable, painful, and it’s certainly not fun.
Still, there are some cool things about being a kid with JIA, like access to JIA camp, where kids form unbreakable bonds while swimming, tie-dying, and roasting s’mores. Or attending a national arthritis conference in Washington, D.C. to lobby Congress (and discover their inner change-maker in the process).
To find out what it takes to thrive while living with JIA, we talked with three teens who are walking the walk.
Mariah Aquino-Truss, 14, a high school freshman in Pittsburgh, PA
Lorenzo DiDesidero, 18, a high school senior in Mt. Sinai, NY
Evie Precup, 14, a high school freshman in Aurora, IL
Q: What are some misconceptions people have about arthritis, and JIA, in particular?
DiDesidero: “The first misconception is that only old people get it. I [also] think there’s a misconception that one medication can help everybody. It can’t. Each person has a different makeup. What helps me might make someone else sick with one dose. I’ve gotten side effects like dizziness and diarrhea when first taking a certain medication. You have to decide whether it’s worth it—it affects each person differently. I have systemic JIA, meaning I can have symptoms from my neck down. Other people have it just in their arms or legs, or their eyes. And there are degrees of intensity. Another misconception is that we can’t do anything. Like running—we run! We’re physically disabled to a degree, but we can still do the things a ‘normal’ person does for the most part, just with some adaptation. At camp, we don’t stop all day. We just keep going.”
Aquino-Truss: “Some people don’t understand that you can be in pain one day and fine the next. I’d bring a walker to school to sit on, and people would ask me questions but not fully understand. I once asked a teacher if I could sit [on it] while everyone was standing or sitting on the floor. She told me, ‘You’re fine. If you sit down, I’ll need to send you to the nurse’s office.’ But I knew I didn’t need to go to the nurse’s office. I worked with the school to create a presentation and gave it during an assembly with my sister. I explained, ‘I’m usually in pain, and you can’t see it.’”
Precup: “I once had a problem at school with an adult who had seen a social media post of me playing volleyball over the weekend. She said she didn't believe that I had arthritis and wanted to know why I was now wearing a boot and couldn’t [participate in] gym. But things can change super-fast with arthritis—you can be fine one day and extremely miserable the next. My rheumatologist had told me I could try [volleyball] that weekend, and my coaches were super flexible. This person had no idea—she just saw one picture.
Also, people think that it only involves the joints. I have swelling between my tendons, where they attach to the bone. It’s called enthesitis. For me, it’s a lot worse than my normal arthritis pain, a lot more intense. One day, I woke up and when I put weight on my ankle, it felt like my bones were rubbing against each other.”
Q: Why is JIA camp so popular?
DiDesidero: “It’s [often] your first chance to meet other people your age who have it. Some are a little older or younger, as well as adults who had it as teens, so you can see what your adult life might be like. Part of the connection is the sense of understanding without needing to explain. But you also get to do normal things: cooking, making cookies, hot chocolate, brownies, and making tea out of wild plants, [plus] crafts and sports, or our own version of them. A lot of people love going into the lake, because it’s not as hard on your body. You can go biking or hiking, and when we play ‘capture the flag,’ if you can’t run, you can fast walk. We’re doing it for us, and we do whatever works. We adapt it to ourselves.”
Aquino-Truss: “I had a flare during my first summer at camp. I was 10 years old and had never been away from my mom for that long. The friends I made there helped me a lot. They made me drawings. My camp counselor would sit by my bed at night and hold my hand until I fell asleep.”
Precup: “We get to go boating and blobbing, which is this big pillow that someone jumps on and you fly off of it into the water. And we sit in this big circle and talk about more serious stuff: ways to deal with JIA, coping methods. One year we made heating pads. And, we had a smoothie competition, learning about healthy foods to fight inflammation. I started going to camp at age nine, the year I was diagnosed. My mom was the camp nurse, and she has psoriatic arthritis, like I do, so I got to have her there with me.
The friendships you make with some of those kids are better friendships than your average ones because you connect on a different level. Everyone’s there for the same reason—we’re all dealing with it, we’re all hurting. I met one of my best friends, Maya, at JIA camp, and she’s always there to talk, especially when I’m having a bad day or a flare-up. She just understands, as opposed my other friends who might not get it. Especially with the meds, she understands how difficult it can be dealing with the side effects. And the pain—some of my friends might think I’m [talking about it] for attention.”
Q: What are your superpowers?
Aquino-Truss: “I’m very determined. Anytime I want something, I usually can get it. It helps me with advocating for arthritis because I’m persistent. I don’t just quit and I hate losing. With JIA, I don’t let not being able to do stuff discourage me. I used to be competitive in sports and still am in P.E. And when we play family Mario Cart, I’m so competitive.”
Precup: “I’ve gotten better about speaking up. Before I felt so different. I never said much about how I was feeling or what I needed at school. But now I'm in a high school. I got a 504 plan this year and I had a say in it. I can get up and move around during class if I need to. The other day, my P.E. teacher asked me how I was feeling because I was going slower around the track, and it made me feel better that she was aware of it, because I pushed for it. Also, last year I played on the highest club team for volleyball. That’s a big accomplishment.”
DiDesidero: “I’m a creative person. I draw, make art, and write for fun—journal entries and some fiction. Last year, I was a speaker at an Arthritis Foundation gala event in New York City and helped raise over a million dollars in one night. I like being able to help myself and others. Maybe others can’t speak for themselves, or don’t have the opportunity to do so, but I have that opportunity. My mom and I have gone to the Arthritis Foundation Summit in Washington, D.C., and have talked to teams of senators and politicians.”
Q: How do you work through a bad JIA day?
DiDesidero: “The summer going into my sophomore year of high school, I was barely able to walk and needed to be carried and fed. My friends could just go out and I couldn’t even dress myself or get food to my mouth. I felt trapped. Now, on an average bad day, I’ll have some trouble walking, will be fatigued, and my arms, hands, or feet may be puffy or red. I rest and try to sleep a little longer. Maybe focus on things not as physical like school work, or drawing if I just want something fun and relaxing. I’ll paint watercolors outside, or draw anime or cartoon characters. It’s good to have a creative thing that help you express yourself without necessarily going out into the world.”
Aquino-Truss: “I draw, I write, I play guitar. It’s an escape. I taught myself how to play guitar using an app, and I write music, too. I’ll talk with my best friend, Zoey. She doesn’t have JIA, but she listens anytime I’m having bad day. She’ll come over, sit in my bed with me, and make me laugh. And I snuggle with my mom still. She rubs my back. It always makes me fall asleep.”
Precup: “Last year, I didn’t go to school for a couple of days because my hips were bad. I’ll just rest, take the meds I can take. Sometimes I can take a really hot shower, especially when [it hurts] in the morning. I’ll text my friends from camp or the JIA conference and they’ll help. They tell me, ‘Just take it easy today, it’s okay.’”
Q: What’s next on the horizon for each of you?
Aquino-Truss: “I’m taking an advanced ballet dance class after school with my friend Zoey, which is exciting because I’ve been practicing so hard. And I’m becoming a big sister in October. I always see my friends’ baby sisters and think, ‘Oh my gosh, I wish there was a baby in my family,’ so I know I’m going to want to take care of it. I’ll just want to hold her all the time.”
DiDesidero: “I’m interviewing for college. I want to go into library sciences—you can become a librarian, curator at a museum, or archivist. It’s not just about information, but educating the community. [When looking at colleges], I need to make sure there’s a hospital near campus. Not everyone has rheumatologists who understand JIA. I also currently don’t use my wheelchair that much, but let’s say I had to—it would be helpful to have ramps into my dorm and buildings; elevators; and handicapped spaces in parking lots. I also try to be aware of the landscape, looking for [campuses with] flatter, not-as-hilly areas, in case I’m using a wheelchair or cane.”
Precup: “My family runs the Arthritis Foundation’s Jingle Bell Run every winter. This year, it’s virtual and I’m the youth honoree for the Western suburbs of Chicago, so I’ll tell my story via Zoom. This is my first year of high school. We’re in-person and it’s going really well. I like my graphic design class. We’re learning photoshop. I’m going to use my new skills to help make posters for fundraiser nights. I want to go to medical school—pediatrics, definitely, and probably rheumatology. I love my rheumatologist so much. She inspires me. I want to help kids like myself.”
Q: What do you want other kids newly diagnosed with JIA to know?
Precup: “When you’re first diagnosed, you think you can’t do things other kids can. You feel so different. But you’re not. You’re actually so much stronger than anyone else, because you have to deal with the pain, medications, and stress. Also, don’t be afraid to speak up and let people know you need different accommodations … when I was first diagnosed, writing was hard for me. I had these pencils that looked like a wishbone, and they were easier to grip and control. And in fifth grade, when I had standardized testing in school and couldn’t fill out those [answer] bubbles, I highlighted my answers and my teacher filled them out for me.”
DiDesidero: “Don’t be scared of it because JIA can be handled or managed. There’s the Arthritis Foundation, a whole organization dedicated to helping people with arthritis. Get involved with that community. And don’t be afraid to ask questions so you can learn how to best deal with it. I think people feel bad if they don’t understand a doctor’s answer, but it can be confusing! [Also,] don’t be afraid of the injections. It feels good to give yourself the injection, if you can—it’s empowering because you’re taking care of yourself. It feels like you’re making the decision for yourself instead of having it made for you. Don’t be afraid to push yourself out of your comfort zone.”
Aquino-Truss: “There’s always hope and a ton of other people out there for you. You’re not alone. My mom tells a story about how when we went to a Juvenile Idiopathic Arthritis Conference a few years ago. There were 1,000 kids in the room with JIA. A speaker said that if we had all been there 30 years ago, nearly every kid would have been in a wheelchair. But on that day, only two were. Science has come a long way.”
- Nearly 300,000 Kids: Arthritis Foundation (n.d.) “Juvenile Arthritis.” arthritis.org/juvenile-arthritis?_ga=2.266497226.516565578.1601351149-317665796.1597336676
- Meaning It Affects: National Institutes of Arthritis and Musculoskeletal and Skin Diseases. (2019.) “Arthritis and Rheumatic Diseases.” niams.nih.gov/health-topics/arthritis-and-rheumatic-diseases
- The Most Common Type: Arthritis Foundation. (n.d.). “Juvenile Idiopathic Arthritis (JIA).” arthritis.org/diseases/juvenile-idiopathic-arthritis
- About JIA: Arthritis Foundation. (n.d.) “Juvenile Idiopathic Arthritis (JIA).” arthritis.org/diseases/juvenile-idiopathic-arthritis