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What it’s like living with arthritis in your teens and twenties

Lucy Tyler, 23, from Norwich shares her experience of living with juvenile idiopathic arthritis (JIA).

I was diagnosed with JIA (juvenile idiopathic arthritis) when I was 14 years old.

I’d never had any issues with my joints or mobility up until this point. One day I noticed that my elbow was sore, so I went to the doctors and they said I may have slept on it funny and referred me for physiotherapy.

By the time I had my physio appointment my knees had flared up too. They were swollen and painful, and I was struggling to walk. The physiotherapist luckily knew that something wasn’t right and referred me for blood tests. Very quickly I was referred to paediatric rheumatology and given my diagnosis of juvenile idiopathic arthritis, and referred for steroid injections into five joints under general anaesthetic.

How arthritis affects me day-to-day

This condition impacts my daily life even when I’m not having a flare-up. Fatigue is a big side effect of both my condition and my medication. I seem to feel tired no matter what I do. Even a walk can lead to lots of pain, so I have to be careful with my activities. I have to pace myself and tell myself that it’s okay not to be able to do everything!

I’ve found lots of support through Versus Arthritis as they share a lot of stories of people going through the same thing as me, which helps me feel less alone. I also managed to find two girls through a Facebook group who live near me and also have JIA, and they’ve become my best friends and an amazing support system for me.

How I manage my condition

My condition is managed by medication that suppresses my immune system, which helps to keep it under control. Unfortunately, this means that I’m also more prone to infections, so I have to be careful not to get ill.

Advice I’d give to someone who is newly diagnosed is not to see it as a limitation. It’s important to pace yourself and not push yourself too hard, but it doesn’t have to mean that you can’t do anything. I would also recommend reaching out and finding people going through the same thing, it’s amazing having friends that I can just vent to when I’m struggling and knowing that they completely understand how I feel!

Bex Bastable
Bex Bastable
Bex is a journalist and the co-founder of The Women's Work Collective.


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