Interview: Normalising arthritis in young people

Arthritis is often associated with the older generation, but it can affect anyone at any age. When Eleanor was in her late teens, rheumatoid arthritis took over her life, now 26, she wants more awareness for young people.

Eleanor

In the UK, rheumatoid arthritis (RA) affects more than 400,000 people, with the immune system targeting joints, leading to pain and swelling that can be debilitating. When Eleanor was 19 and at university in Leeds, she was diagnosed with RA.

“It was like I woke up one day and my shoulder was in agony,” recalls Eleanor. “I went to the doctor about the shoulder pain and because the weather turned cold there was pain in my feet, at the time, I didn’t think they were linked at all.”

After receiving blood tests, Eleanor was told she had the highest inflammatory markers her doctor had ever seen.

“I’d had what is referred to as freshers’ flu and I think it was as if something almost ignited my immune system and kicked RA into action,” explains Eleanor.

Loss of independence

At diagnosis the pain mainly affected Eleanor’s hands and feet, but it quickly spread through her body until only her jaw was unaffected. Her treatment plan began, but as the inflammation continued and Eleanor lost her ability to walk, she was also hospitalised as her liver couldn’t break down medication.

“It got to the stage where I couldn’t do anything for myself, I took a year out of uni and my mum essentially became my carer,” reveals Eleanor.

After a year and a half of trying various medications, Eleanor found something that worked for her, but by this point irreparable damage had been done.

“Over time my arthritis had damaged my left hip so badly, after an X-ray they said there’s no cartilage left, it was just bone on bone, there was nothing to do but give me a hip replacement,” remembers Eleanor.

“The drugs started working so as soon as I recovered from surgery I was back to normal. It was weird because I went from such an intense two years from being healthy to completely disabled back to healthy again.”

Knowledge

Since Eleanor found the right treatment, she has rebuilt her life: reaching the finals of Miss England, starting her own business and becoming an advocate for young people with arthritis through the National Rheumatoid Arthritis Society Young Voices Panel.

With very little previous knowledge of the condition herself when diagnosed, Eleanor didn’t like speaking with her peers about it, often avoiding the word arthritis when asked.

“It sounds like an awful thing to say and quite silly, but I remember wishing it had a cooler name,” admits Eleanor.

“I felt like I was suffering enough as it is, the last thing I wanted was people thinking I was uncool as well.”

As Eleanor is able to manage her condition, she now feels more comfortable speaking about what she has been through, but wants more awareness of how it can affect young people in order to break down the stigma she felt after her diagnosis.

For more information and to find support speak to Versus Arthritis, NRAS or Arthritis Action.

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