Jess 

"Life is different, challenging, and sometimes painful, but it’s also taught me resilience, patience, and the importance of self-advocacy."

Hi, I’m Jess, I’m 19! I was diagnosed with juvenile arthritis at around 16 months old. I don’t remember it, but my parents noticed I went from walking normally to shuffling on my bum and crying a lot. That’s when they took me to the hospital, and from there, I’ve been under the care of Leeds Hospital for 18 years. They’ve always been incredibly caring and responsive to any flare-ups, which my family and I deeply appreciate.

By the time I was 13–14, things in my right ankle got much worse. I used to dance - ballet, tap, and jazz - and what used to bring me joy became extremely painful. Some days I’d come home crying from pain I couldn’t explain. At school, I used to wear boots with chunky insoles because I couldn’t walk without them, and teachers would pull me up in the corridors, saying I was making excuses, even though they had my medical records and knew I had juvenile arthritis.

In March 2022, after my Food Tech GCSE exam, the pain became unbearable, and I couldn’t return to school. A referral to the pain team led to a diagnosis of complex regional pain syndrome (CRPS). It was a long, emotional appointment, and I was told there wasn’t much that could be done. It felt like my life had suddenly changed, and I didn’t know how to manage it.

CRPS made it impossible to wear shoes or socks. Things that should feel soft - fluffy slippers, socks - felt like sandpaper or the scratchy side of velcro. It’s a kind of pain that’s hard to describe and even harder to live with. I did my GCSEs at home. I passed, and even did well in a few.

After months of desensitization therapy, I could wear a loose shoe and sock again. An orthopedic consultant revealed the extent of damage in my foot, bones knocking together with no cartilage, parts missing entirely. He planned an ankle fusion, which happened in summer 2023, but it triggered a massive CRPS flare. I haven’t really recovered and my foot is now completely unusable. I didn’t leave the house for eight months and even developed seizures due to the medication and trauma. 

Now, I’m a full-time wheelchair user. I can stand on my good leg, but even that is affected by arthritis, making it difficult to do everything I used to. Life is different, challenging, and sometimes painful, but it’s also taught me resilience, patience, and the importance of self-advocacy.

I’ve learned the value of setting boundaries, saying no, balancing rest with the things that bring joy, and asking for help when I need it, whether that’s from family, friends, or professionals. Therapy has been a huge support, helping me manage both the physical and mental challenges. I've met some of my best friends through social media, and while they don't have the same conditions as I do, we have mutual experiences and I'm very grateful to have met them. I’ve also used it to advocate for disability awareness, educate people about CRPS and arthritis, and push back against ignorance. Sometimes people don’t want to understand, and that’s okay, I focus my energy on the people who do.

I want anyone going through challenges to know: it’s okay to ask for help. It’s okay to rest. It’s okay to live differently. It’s okay to fight for the things that make life worth living. Even in the hardest moments, there’s resilience, connection, and joy to be found. Life is about finding balance, leaning on support, and celebrating the things you can do. At first, I felt embarrassed going out without a shoe, because it looked unusual and I worried what people would think. But over time, I’ve learned not to let that stop me. Even without shoes, I go out. I keep living. I keep pushing forward. 

You can find Jess raising awareness on Instagram at @rolling_with_jess

We'd also like to express our thanks to another Jess at @tellingherstory_ who helped to prepare Jess's story to be shared on social media and we are sharing here with kind permission from both Jess and Jess. 

If you would like to share your JIA story, please get in touch.

If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkJIA.org

For support at school, please visit our Parent Zone. Schools and universities can request an information toolkit to support children and young people with JIA in their setting at www.jarproject.org/schools 

Many of the resources we have developed can support children and young people at school and with explaining their condition to others such as our "I have JIA" cards. You can access these here.

For support with Mental health, please see our Mental health and wellbeing page here.  

You can also help us be there to make life better for children and families affected by JIA by supporting our work at www.jarproject.org/fundraising