“Mum and dad didn’t think it could be arthritis, as I was so young.”30 March 2021
Emily, 21, is a university student and was diagnosed with juvenile idiopathic arthritis (JIA) when she was one. She tells us how she’s learnt to adapt and the importance of talking about young people and arthritis.
“I was showing I was unwell, I was constantly crying, and my parents noticed I had a swollen ankle.”
I was only about 18 months old. My parents took me to the GP, and I went to A&E three times, but nobody knew what was wrong. My parents took me to a different GP who said I had JIA.
I was referred to Birmingham Children’s Hospital for tests to figure out which joints were affected and to give me steroid injections. They initially thought I had leukemia before confirming I have JIA. I was officially diagnosed with JIA when I was one and with uveitis when I was two.
Uveitis is the illness that worries me the most. It's difficult to tell when I am in a flare, compared to my joints, as I can physically see and feel when they’re bad.
It's definitely the scarier illness, as you only get one set of eyes and you can replace joints.
“I started to realise that I had arthritis when I was seven or eight-years-old.”
By the time I was about eight- years-old; I was young enough to understand that not everyone goes to hospital during school time.
My joints would swell up and I had to take loads of time off school due to my symptoms. Not all of my schools supported me with my illness.
When I was younger, I met a couple other children with JIA. I found Versus Arthritis online and seeing the adverts on TV made me emotional.
“My symptoms have been up and down all of my life.”
I’ve been in a flare up for about a year. I’ve been on adalimumab injections for about a year – other meds stopped working. I’m on leflunomide tablets daily and eyedrops for uveitis and on and off steroids for my arthritis and uveitis.
I want to raise awareness, as I was always told, ‘you’re too young to have arthritis’ and I still get that comment to this day.
Now I’m older, I’m coming to terms with it more. When I was a younger teen, I didn’t put my arthritis first. Now, I think about it more, as I’m more aware of what’s going on.
“All through my childhood up until I was a teenager, I was quite sporty.”
I used to do running, netball and other sports at school. Also, I did horse riding until I was 17, then my knees started getting worse and I had to stop.
I am still looking for exercises that don't put too much pressure on my knees. This is main reason I asked for physio recently, so I can exercise again.
“I used to hide my arthritis from people at school.”
I’ve encountered that mentality ‘you’re too young to have arthritis’ quite a lot. Now, I care less about what people think. I’m better about talking about it.
I applied for disabled students allowance as I am at Coventry University, and I would 100% recommend this to others!
Some people ask me why I have a fridge in my room (this is for my Humira (adalimunab) injections and is one of the things they provide under disability allowance). So, I talk about why and explain my arthritis to them.
My closest friends understand that I can’t do as much as they can. I need days off sometimes. My parents, especially my mum, understand my arthritis more than I do sometimes.
“If I could tell my younger self anything and give others advice...”
I would tell myself that going into hospital for all these horrible treatments is to help me. I would also say to not be so embarrassed about having a chronic illness, it’s nothing to be ashamed of.
I have days where I feel super strong mentally, then there are days where I feel dreadful and feel very frustrated with things I cannot do.
Having these challenges has shaped who I am as a person. Arthritis is a huge part of me, but I don't let it define me.
My advice to others would be:
- Heat packs are a life saver for the pain and for swelling, I use ice. Soaking in hot baths helps to relax my legs.
- I also invested in a maternity pillow when I was going through my flare up last year to help me sleep. It’s amazing!
- Listen to your body. Rest is just as important as other treatments. I get bad fatigue so my body will tell me if it needs a break.
- Speak to others about your arthritis. I have a personal tutor at uni who I can go to if I am struggling and it’s good to have someone to talk to. I speak to my friends' a bit, but I prefer to talk to my parents.
If you or a family member under the age of 25 has arthritis, we run a Young People and Families service that provides information and support and puts on a range of events across the country.
Our service helps young people and children offers advice on how to live well with arthritis, medication and potential treatments, as well as creating a safe space to ask questions, receive information and develop support networks.
Find out more about our Young People and Families service.
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