As you get older, it becomes more important to stand up for yourself and stand up for what’s important to you – whether it’s helping out at the animal shelter, making sure your local playground is safe, or speaking out about juvenile arthritis. That’s what an advocate does.
Not everybody has to speak in front of congress, like Mikayla M., 10, did. She explained to the people who run our country how JA needs more money for research to help find more treatments. Good for her! You may never want to get in front of a crowd at all. But the day will come when you will probably have to talk to a bully about JA or explain your disease to your classmates. How will you do it?
An advocate also needs to learn how to take care of him or herself. After all, one day you will grow up and want to live on your own and have your own adventures. Of course, you have plenty of time to transition into being in charge (you can learn more about this in the Teen section, when you’re ready), but it’s good to think ahead.
Step 1. Talk to Your Friends about JA
"This year I decided that people should just learn to accept me," says 12-year-old Margo N., who figured people would think she was a “weirdo” if she told them about her arthritis in her hands, wrists, and knees. “I was very surprised to find them interested in what I had,” she says. Her friends even searched on the Internet to find ways to help her! “It made me feel special that people actually did accept me because they felt my pain. I found that people do care” when you tell them, she says. “It just has to be the right people.”
Tired of being made fun of because she didn’t do well in gym, Hadley C. asked her teacher if she could do a PowerPoint presentation about living with arthritis. Up until that point she had been afraid to tell anyone that she had arthritis. The answer was yes. And Hadley’s presentation to her fifth-grade class was a hit. “Everyone in my class understood me and stopped making fun of me! Now every time I meet someone new I make sure to tell them about my arthritis,” Hadley says.
Step 2. Start to Take Charge of Your Own Health
Pay attention When you’re at your doctor appointments, listen to what’s being said. All of those appointments can be soooo boring, but this is your body and disease those people are yakking about so tune in! The more you know – the name of your disease, the parts of your body it affects, the names of the drugs you’re taking, the reason you’re doing the exercises – the more you can be part of the conversation as you get older.
Keep track. Keep a JA journal where you write down everything you’re learning and keep track of your medications, treatments, and exercises.
Be prepared. Carry a list of important information with you. Your list should include: your parents’ telephone numbers, your doctors’ telephone numbers, a list of the medicines you take, and a list of anything you are allergic to.