8 Social Media Feeds to Inspire Your JIA Kid
Having arthritis as a tween or teen can be isolating. Help your child connect with these online JIA warriors.by Amy Marturana Winderl Health Writer
Hands down, one of the best things about social media is, well, that it’s social! No matter what your interest, passion, or medical condition, you can search for and find a community of others who share and understand your experiences. For kids with juvenile idiopathic arthritis (JIA), who may feel isolated with their condition, virtual connections can foster support and a sense of belonging they may not find among their peers at school.
Just like rheumatoid arthritis, JIA causes inflammation in the joints. The “idiopathic” in JIA means “unknown,” because doctors haven’t quite yet figured out why some kids get this autoimmune condition. There are six different types of JIA, with each manifestation of the disease impacting various parts of the body, including joints in the knees, ankles, elbows, and wrists; ligaments; and/or organs.
Though JIA can cause visible joint swelling and impact mobility to the point that a young person might limp or even need a cane or other assistive device to walk, it is very often an invisible disease—which means that kids who have it may feel misunderstood or alone. That’s why connecting with other teens, tweens, and influencers who “get” what they’re going through—and who can even teach them a thing or two—can be so huge.
The social media accounts below are all great sources of information—and loads of inspiration!—for kids with JIA.
Alyssa was diagnosed with JIA when she was 11. Now 20, she posts about living with a chronic illness on her blog, as well as on her Instagram and YouTube accounts. Her posts about her difficult journey to find the right rheumatologist and medications that work for her send an important message to other young people with JIA: Keep advocating for yourself and pushing until you get the care you need. Help is out there—and you deserve it! She also posts motivational tips regularly—things like: “Owning your story is the bravest thing you’ll ever do”—which can really give a kid the oomph she or he needs to push through a tough day or moment.
Our recent fave quote: “No storm will last forever.”
Arthritis Hype House, @arthritishypehouse
This account is compiled by multiple young people with JIA who aren’t afraid to get real about the condition. Some posts are more serious, while others incorporate TikTok audio and trends to make light of the realities of life with juvenile arthritis—including the unpredictability of flares, interactions with doctors, and typical questions other kids ask. They also bust myths about JIA—like the false notion that kids can’t get arthritis. It’s a great mix of education and humor that people with JIA will find extremely relatable, and that people without JIA will find informative and enlightening (especially if they know someone with JIA and don’t really understand what they’re going through). The comments section is also really productive. Followers tend to ask great questions, and the kids behind the account respond and share their experiences openly.
Our fave recent quote (about kids not getting arthritis): “I don’t know what happened, but somewhere along the line you’ve been horribly misinformed!”
Account creator Suruthi was diagnosed with JIA at age 3, and after years of feeling alone, decided to make an Instagram account to share her experience with JIA and rheumatoid arthritis (RA), two distinct but related conditions (although they do share the same treatments). Now 22, she uses memes and illustrations to educate her followers and to send encouraging messages. “I had people at university tell me they don't believe me, even after showing them a diagnosis letter from the doctor. This experience was so painful for me, and I didn't want other people out there feeling alone,” she shares. “I wanted to show that it's OK to have a difficult time, but it doesn't mean you are invisible.” She also notes how social media has helped her find other people that empower her to stay positive and keep spreading awareness. “I've been so lucky to connect with similar people on this platform who continue to empower me to do what I do!”
Our fave recent quote: “Don't compare [yourself] to others because comparison really is the thief of joy, and we are all on different journeys.”
Jenny, 19, shares an important message on her Instagram: A positive attitude can make a world of difference. Whether she is posting about being in the hospital, using her assistive devices to get around, or sharing her diagnosis story, she always has a smile on her face. She also posts about her other chronic illnesses, including endometriosis, POTs (postural orthostatic tachycardia syndrome, which impacts circulation), and CRPS (complex regional pain syndrome, a type of chronic pain.). One big topic she touches on is how doctors did not believe her pain and told her it was all in her head—something that sadly happens way too often—for multiple years before she finally was taken seriously and diagnosed with JIA and endometriosis. Her detailed posts about the ups and downs of life with JIA are real and honest—reassuring other kids like her that when it comes to this disease, it's OK to feel all the feels.
Our fave recent quote: “Let’s talk about a medical topic that has affected me greatly. Being told it’s all in your head/you’re making it up. I can’t begin to describe how angry [that] makes me feel.”
“Mariah’s Movers” started as a Walk to Cure Arthritis 5K team name in support of Mariah Aquino-Truss, a teen with JIA who was diagnosed at age 5—but only after years of trying to understand a laundry list of her health problems. Now, the team name has turned into an online community of people who feel passionate about raising both awareness and money for the cause. Mariah, whose JIA symptoms are currently being well-managed with medication, and her supportive family and friends regularly shout out about the disease on social media, and attend JIA-focused conferences, walks, and speaking events. On the Instagram account, which is run by Mariah’s mom, you’ll find posts encouraging people to share their stories to teach more people that arthritis is not just a disease for older people. There are also some great reminders to be compassionate towards people with autoimmune conditions.
Our fave recent quote: “Advocacy is important to us because it gives us a voice, so we don’t feel so helpless!”
Addy’s account gives a real inside look at everyday life with JIA (and type 1 diabetes and celiac disease, too). Her posts are often super-casual: She shares videos and photos of herself taking her medications, and discusses on camera the side effects they sometimes can cause. She vents about the annoying things happening in her life, just like any other teenage girl might do, but she also educates her followers, and doesn’t hesitate to share the gritty details, like showing the syringes and needles of her various medications. All this frank talk can help other kids with JIA see medical must-dos like self-injections in a more neutral way, instead of as bad, painful, or even frightening. She also posts the occasional hospital dance video, which is always a nice way to see how she makes the most of a tough situation.
Our fave recent quote: “I’m kind of in the mood to complain […] and I would complain to my friends about it but it’s not the same. I feel like to them it’s just being annoying, but a bunch of you guys have other medical problems, and you can probably relate.”
This UK organization is dedicated to spreading awareness about all kinds of arthritis. Its Instagram feed is full of information (”Strengthening and stretching: What are the benefits?”), plus posts that are meant to prompt meaningful discussion among the arthritis community (”How do you look after your emotional well-being?”). There are also a plenty of updates on research and advances in medicine for people with different types of arthritis, including JIA. By sharing stories about real people who battle the symptoms of arthritis, this group also helps normalize the condition, shows how there are many faces of the disease, and shares the many ways to treat and manage JIA. That in itself is a real source of hope.
Our fave recent quote: “We're the 10 million people living with arthritis, and we're pushing back against its impact.”
Through sharing her own personal experience growing up with juvenile arthritis and now managing it as a young adult, Elizabeth shows how people can not only survive but thrive with the condition. Her posts talk about how JIA can impact a person’s life, how important it is to advocate for yourself, and how to stay hopeful and overcome obstacles that inevitably happen when living with a chronic illness. She also posts about arthritis myths that she often hears, and shares some valuable tips and insights for other people learning to live with the disease—such as what to do when chronic pain makes it tough to focus on work or school, and how important it is to surround yourself with a circle of people who are supportive. That’s an important life lesson for everyone, but even more so for people navigating an invisible disease.
Our fave recent quote: “Growing up with a chronic illness matures you in unexpected ways. While I’m not thankful for having JIA, I am grateful for the lessons that I learned from it at a young age.”
JIA Facts: National Arthritis Foundation. “Juvenile Idiopathic Arthritis (JIA).” arthritis.org/diseases/juvenile-idiopathic-arthritis