‘I was diagnosed with arthritis at 21 – I had blamed my foot pain on high heels’

When I tell people I’ve got rheumatoid arthritis (RA) their first reaction is usually “but you look so healthy!” Or “But you’re too young.” It gets wearing, having to deal with the stigma of having what is perceived as an “old person’s disease”, on top of having the thing itself.

Whereas osteoarthritis can affect much older people who’ve suffered “wear and tear” through age and overuse of their joints, RA is an autoimmune disease that attacks the joints and causes inflammation. I don’t really know why I have it, but some doctors believe there’s a hereditary element triggered by environmental factors, including stress.

I was 21 when I first noticed anything. I was still at university in Hull and I had gone to London for the day to collect my Duke of Edinburgh gold award at St James’s Palace. I wore some black high heels for the occasion. But when I got back to my student flat and tried to walk down some stairs, I simply couldn’t.

The pressure on my feet was so painful, I limped down wondering what the hell was going on. I blamed the heels and the fact I’d been rushing around London.

But the next day my feet were still swollen and painful. And it carried on, even wearing my loosest fitting trainers was agony in the mornings. It got a little better as the day wore on, and I could still have some drinks and be a normal student in the evenings, so I pushed it to the back of my mind. I was confused but just thought it would go away.

It was a few weeks before I mentioned it to my mum, Julie, a registered nurse, at our family home in Cambridge. Mum said “I don’t like the sound of that, see the student GP.” Dutifully, I did. But he didn’t even run blood tests. “You’re very young,” he told me. “Try doing some yoga.”

I felt confused and frustrated, but at the same time I wanted to take his word for it. The foot pain continued and back home, when I was cycling in Cambridge, I noticed my hands were swollen and I struggled to grip the handlebars. “Enough,” said Mum, who marched me to our old family GP who listened and then referred me to see a rheumatologist at Addenbrookes. Arthritis never crossed my mind. I didn’t know anyone with it and couldn’t even spell it. 

My MRI showed inflammation (which I hoped might be a virus), but it was an X-ray that finally revealed my diagnosis. What’s more, I had bone degeneration in my thumb, a result of not being treated quickly enough. 

I was just 22. I don’t think the rheumatologist had much experience of breaking the news to young people because I left the hospital clueless. Later when I saw the GP, I innocently asked: “so you’ll give me something to make it better?” He had to gently explain that it was unlikely I could take anything and “just get better”. 

That’s when I broke down in tears. Mum cried too and said she wished it was her who had it, not me, because of my age.

The first treatment they try for rheumatoid arthritis was a horrible drug called methotrexate. It’s also used in chemotherapy, so I was warned I might lose my hair which devastated me, though luckily I didn’t. But it totally wiped me out, it was as if I had the flu. And they warned me I couldn’t drink on it. That also made me cry because at 22 I wanted to be normal and go out with my friends.

I felt totally shattered, and my friends didn’t really understand why I wasn’t able to go out and have fun. Even worse, for some people – like me – methotrexate doesn’t work. My joints were still inflamed and my self-esteem was on the floor.

It was a dark time.

After two years I then went on a different drug, sulfasalazine, which was slightly better. And I tried to get on with my life. I worked in community radio and then managed to land a dream role as a trainee at Radio One. I told a few close people about my RA but I felt embarrassed. I told my manager but one day they shouted across the room “why are you limping like that?” I was annoyed. There were little things I couldn’t do, like click my fingers into the microphone, I would have to clap instead, and I couldn’t pull doors open. Media is very sociable, but I couldn’t go out with everyone. Managing my arthritis became stressful as I just wanted to fit in.

The turning point for me was when I was 26 and prescribed a much better injectable drug, called adalimumab, which almost overnight changed my life. I got back my flexibility and small things improved like being able to throw the duvet off my bed easily in the morning. I’m also allowed to drink while on it.

I’ve also had a total of eight surgeries now, three on my hands and five on my feet. Although it’s just day surgery, the foot ones mean you can’t walk for weeks but luckily I’ve had sympathetic employers. And I exercised and did physio, determined not to let it stop me living.

My form of RA causes nodules to form, which is basically a build of dead skin caused by proteins in the body. The doctor who removed the two huge ones on the soles of both my feet said he had never seen anything like it.

I do miss things like being able to wear heels – I’m only 5ft 3in. I have to wear very wide shoes that my special insoles can fit into and which won’t cause my body to create more nodules. I don’t like to think about whether I might need future surgery. I’m taking it one day at a time. 

I’ve recently started an Instagram account, @s.a.r.a.h.health, offering healthy tips and support to others. I love getting messages from people saying I’ve helped them. 

I’m much more health aware since my diagnosis and live healthily, I run 5k three times a week, am totally on top of nutrition, eating a mainly Mediterranean wholefood diet, I’ve never smoked and only drink in moderation. I’m now 

in remission, and haven’t had a flare up for years. If I get stressed my wrists sometimes ache, but that’s it. I have annual check ups at Royal National Orthopaedic Hospital because I still have small nodules, though they don’t cause pain. 

Alistair was my best friend before he became my boyfriend, and he’s been so supportive over the years. One day it might be lovely to start a family, and I would be allowed to stay on my medications until the last trimester which is encouraging. I really want to make other people, especially young people with RA, feel less stigmatised and isolated. And with a new trial showing that injections of drug abatacept can reduce RA by 80 per cent if caught early enough, perhaps hope is around the corner.

As told to Susanna Galton

Versus Arthritis is the UK’s largest arthritis charity. For further information and support, you can visit versusarthritis.org or call the free helpline on 0800 5200 520.