Lucy's story: "TikTok makes other young people feel seen"

Dispelling the myths around living with JIA

Lucy Crane, 20, was diagnosed with Juvenile Idiopathic Arthritis (JIA) days before her 16th birthday. She posts videos on TikTok talking about her experiences and has recently joined Arthritis UK’s Young People’s Panel because she’s passionate about raising awareness and dispelling the myth that arthritis doesn’t affect the young.

Arthritis UK’s TikTok dance challenge, is such a cool idea and, because it’s been put together by a choreographer and a physio, it’s a great way to get moving, to get exercise in a cool way. I hope the whole thing will bring people together to have fun and offer that underlying message that young people do get arthritis.

The painful pathway to diagnosis

My wrist started hurting when I was 14 and it was so painful. After an x-ray at minor injuries, we were told it was most likely a sprain, I was given a splint and told to see how it went. A week later, we went to the GP who referred us to a physio who, after a couple of sessions, referred us to another physio who thought I might have a hairline fracture.

By this point, my wrist was red, swollen, hot and the pain was going into my fingers and elbows. The next person I saw as a sports doctor and, after a bunch of scans and MRIs, they were still trying to find the cause but nothing 100% added up. Then the pain started to reflect in my other hand and I started questioning myself, wondered if it was in my head.

When a doctor did a steroid injection straight into my joint, it didn’t work, then I was referred to a rheumatologist who gave me another steroid injection that worked really well. That’s when they diagnosed Juvenile Idiopathic Arthritis (JIA).

At first, I think I was relieved to have an answer but, on the car journey home, it hit me that it wasn’t something that could be completely cured and that was quite overwhelming. 

Treating JIA

The first medication I was given was sulfasalazine which wasn’t very effective for me, then they moved me to hydroxychloroquine which made me feel so sick I couldn’t take it. Then, I went on to methotrexate tablets for a couple of months which weren’t as helpful as we expected so they switched to injections which were more effective.

Learning to inject myself was quite scary but the incredible people at Great Ormond Street Hospital were amazingly helpful, giving me so much time and care. The nurse did the first injection then I did the second myself, which was quite daunting, but after a few times, it became a way of life. I have struggled with it recently but I think that’s a mental rather than physical thing because it makes me feel quite sick so it’s hard to inject myself.

I also have biologic infusions once a month which really helps. The cocktail of medication works for me but methotrexate is extremely hard to take and I do tend to miss it at times which causes flare ups but you have to pick your battles. The methotrexate also causes fatigue, but then so does the arthritis, so it’s a bit of a catch 22.

Managing arthritis fatigue

I’ve found resting doesn’t help with fatigue whereas, being active makes me naturally tired but improves the fatigue, leaving me more energised. I couldn’t manage without exercise, running has been incredible for me which sounds weird because walking can sometimes hurt. I think it’s the endorphins running gives me, it’s so good for me mentally, I can focus on how far and fast I’m going and forget life for a bit.

Arthritis is different every day but I am very stubborn and try not to let the pain stop me from doing something I love. I always try and be really positive but, like anyone, I do have down days but I know that constantly feeling sorry for myself, constantly dwelling on it, won’t change anything. I think mental attitude is really important.

It wasn’t idea being diagnosed with this in my teens but, when it comes to accepting the diagnosis, I’m not sure I really have. I just don’t want it to define me because there’s so much more to me than having arthritis, it really isn’t the most exciting or interesting thing about me.

One of the hardest things is lack of awareness. When I tell people I’ve got arthritis, they are usually surprised or confused because they don’t know young people can have it so I always try and take the time to explain it to them.

How the Young People's Panel helps

I joined Arthritis UK’s Young People’s Panel because I feel so strongly about awareness. I want arthritis to be considered a possibility when a young person is in pain because the longer it goes untreated, the worse situation you’re in. It’s also been so important for me to meet other young people with JIA. It’s been lovely to meet the other ambassadors, people who can relate to your situation, make you feel less alone. I do have great support around me but it’s difficult for anyone without arthritis to really understand so connecting with others through Arthritis UK has been amazing.

I started posting on social media about living with JIA because I wanted to raise awareness. I feel that if just one person watches one of my videos and relates to it, if seeing someone their own age going through similar experiences makes them feel less isolated, then I’ll have achieved something worthwhile.

I tend to post quick, relatable videos on my TikTok. For example, I did one earlier this year explaining infusion to try and make it less confusing and less intimidating. I also try and keep it as light-hearted as I can, try and use humour, because I’ve found humour helps me a lot in life. My really big hope is that my TikTok makes other young people feel seen, let’s them know that there are many of us out there, it’s not just them and they are not alone."