1. You use your super powers
Having an unpredictable condition like JA, with its flares and remissions, requires a lot of flexibility in attitude and schedule. It puts a lot of pressure on kid your age. Yet the teens who manage JA the best seem to find a way, embracing a go-with-the-flow attitude that helps ease inevitable disappointments. When JA flares up, they’re prepared for extra doctor visits, medications, and limited activities. When the disease eases, they’re ready for school-related activities, planned or spontaneous.
“My JA will always be with me and I've learned to embrace rather than fight it,” Gabrielle B. says. There are times when I will have good days, weeks, months, years, and then there are times when I will not have my good days. But that doesn't stop me from doing what I love and going to school.”
2. You’re really tuned in
If you’re learning to drive or are a new driver, you know how you have to be aware of everything that’s going on in, out, and around the car. The same goes for being tuned into your body when you have JA. It’s the barometer for your disease and your health.
As you get older, you’ll get more and more attuned to the signs that you’re about to have a flare or are on the mend. You’ll know when to rest and when to alert your parents or doctors about a symptom.
3. You play the courage card
You face difficult treatments with a brave face, even when you hate them, like Sydney H. does. “[Needles were] my biggest fear, but I had to get over it in order to feel better,” she says. “Once I got over the fear of needles, they seemed like nothing. Now, the swelling in my joints went down a lot and I feel much better,” she adds.
When kids laugh at you at school you’re brave: “I go to summer camp center for courageous kids,” says Claire S., 13. “It helps remind kids with illnesses like me [that] you’re not alone, so do not give up. It does not matter if people make fun of you or you feel left out. Just don't give up.”
4. You’re a planner and a problem-solver
Maybe you’re going to need help getting your books from the car to your locker. You’ll make a plan. Maybe it’s better to go out for a sport that has one practice a week rather than three. You’re on it. Stiff joints hurt in the morning? You’ll warm them up and go to school an hour late. JA teens learn to “make it work.”
5. You talk like an expert
If you’re like many JA teens, you’ve been dealing with JA for so that you’ve become a true expert. You can toss around the names of the drugs that you’ve tried. You know what worked and what didn’t work. As time goes on, every tidbit you learn about your disease and how it’s treated will help you manage it by yourself later.
Being empowered means understanding what your disease is, its name, how it works, and how to help yourself feel better. The more you know, the more you do for yourself, the better you feel!
6. You deal with the “why me” but still hold your head high
Sometimes JA makes kids grow more slowly. Sometimes the disease makes you walk funny. Most kids know, any time you’re different – whether it’s biggest, smallest, or being the one with the puffy knees – that’s hard. Being different means you have to work harder at being strong and being proud and having hope for a better future. Learning about your disease and how to handle it (both the practical matters and how it makes you feel) can make you grow up a little faster.
“I tell other kids that have [JIA] to always keep your head up,” Caitlin R. says. “Someday they’re going to find a cure. So until then, keep your life going the way you want it to and you can find a way around obstacles in your life.”
Talking about your disease and meeting other JA kids helps you if you’re feeling lonely or mad about having JA – and it’s fun! “I talk about what it’s like to have JA and to raise interest and funding to help kids with JA. By getting out in front of people, I can explain the disease and help others understand what the pain is like,” says Ry B., 14,who spoke to Congressional leadership during an Advocacy Summit in Washington, D.C. “And, it has helped me meet other kids with JA.”
7. You have big dreams
It took years for Erin M. to finally receive a diagnosis as one of the youngest patients with osteoarthritis, she says. After that, there was nothing stopping her. “My doctor was able to get me back into soccer, karate, skiing, and biking. I've had six other surgeries since then to clean my knees out and repair the dislocations, but ultimately my doctor is trying to buy me time because I need knee replacements. I have the body of a 75-year-old woman, but I still go to school, work, and play sports.”
Erin is now a pre-med student in college. “I want to go into orthopedics so I can get another athlete back in their game like my doctor did for me. I live in constant pain but I learned to use it as fuel for my journey. Like the old saying goes, "Do not fear pain, for as long as you feel it you know you are still alive. Well, I'm alive and pain has become not only a major part of my life, but it’s a motivator to push my body to the limits every single day.”