Ten years ago, a Disney Channel special inspired me to start an online journal. Almost every day after school, I curled up next to the family dog and wrote a new post for my blog, “The Girl with Arthritis.”
Friends sometimes teased me for religiously updating my blog, but I didn’t care. It felt like a way of helping others.
I started my blog in an attempt to reach other teenagers and young adults. By sharing my story, I hoped to bring comfort and friendship to other young people. Ten years later, I’m still chronicling my journey to help others through this column and my social media. Now, I share my experience with those who aren’t dealing with JA, too.
Beyond the arthritis community
As a teen, I was hesitant to talk to others about JA. But now, I’m more open to talking about my struggles with those who are unfamiliar with this disease and how vicious it is. I’ve learned that while finding a community who “gets it” is vital, educating others about the realities of arthritis and living with a hidden disability can help them develop empathy, and it creates a more compassionate tomorrow.
Like others with JA, I want people to hear the word “arthritis” and avoid automatically thinking of grandpa with a bum knee. I want them to remember the limping girl who looks like an athlete. I want them to remember her friend, who became legally blind when the inflammation went for her eyes. And I want them to remember that it involves more than sports injuries and needing some Tylenol — it’s about fighting a disease with the power to disable you.
Ways to raise awareness
Sharing my experience on my blog and social media are how I prefer to spread awareness. I try to be open and answer questions as they come. Although it’s my preferred method of raising awareness, it’s not the only way.
One great way to spread the word is by participating in a walk, run, or bike ride to benefit JA-related charities. Sharing your child’s story and asking for donations is an excellent way to inform others and benefit those with JA.
If you’re unable to participate in an event, there are still ways to help your local JA organization. Your child could make bracelets to sell to friends and family while explaining that the proceeds will benefit other children with JA.
It may sound simple, but another great way to spread awareness is by being open about your child’s struggles. While it shouldn’t be the only thing you talk about, bringing it up from time to time can help educate your loved ones about the diseases.
If your child is comfortable with the idea, they may like reading a book about JA to their classmates. Sharing any bit of education helps others learn and be more considerate of those with JA and other hidden disabilities.
While I share my experiences to raise awareness, I also value my privacy. I don’t feel obligated to answer questions that are too personal or that make me feel uncomfortable. I’m also very selective about any photos I share, and try not to share information about family and friends to protect their privacy. It may sound a little strict, but I keep it this way for both my safety and mental health.
Parents, raising awareness for JA is a fantastic thing. But make sure you decide to raise awareness as a family. Your child might not be pleased with their details being shared with others, and that’s OK. It’s essential to share only when it’s comfortable for the entire family.
For some, that might mean having a blog to share with family and friends. Others may share articles about JA on social media, and that’s it. There’s no wrong way to do it.
Remember, you are not obligated to share your child’s diagnosis with the entire world. You can if you’d like to, but no one blames you if you don’t want to. While awareness is necessary, your family’s mental well-being should always come first.
Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Juvenile Arthritis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to juvenile arthritis.
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