I didn’t want to be seen as ‘the girl with a disease’

08 May 2020
Izzie in her graduation gown and on a swing.
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Izzie Clough was diagnosed with arthritis when she was nine. Here she shares the journey she’s been on with her condition, from hiding it completely, to finding a job where she draws on her own experiences every day.

Izzie also shares some fantastic tips and advice for those isolating during lockdown.

Meet Izzie

Sharing my experience with arthritis at the age of 22 is something I never imagined I would do.

This is not because I grew up believing that arthritis is something only old people get – I was diagnosed with juvenile idiopathic arthritis when I was 9 years old. At that age, I just accepted it as the new normal.

At first, everyone thought I’d just sprained my knee. When the other knee started to swell up, the GP suggested that I might have sprained that one too. I was an active kid, so it wasn’t too far-fetched, but I remember thinking it was a bit unfair!

I don’t remember much about my diagnosis, but a doctor did reassure my mum that it would ‘burn itself out’ in a few years.

Unfortunately, that didn’t happen. Still, it was a long time before I really grasped what it meant to have a long-term condition. In fact, I spent the next decade doing everything I could to think and talk about my arthritis as little as possible.

Finding the right medication

Methotrexate was my first medication, but the side effects made me very unwell. I stopped growing and became anaemic, but the thing I remember most is the build-up of anxiety on the day I would have to take my tablets.

Once, I tried to throw them away when my mum wasn’t looking but, at 10 years old, I wasn’t very stealthy. When my mum realised what I’d done, she was furious. Looking back on it, that must have been a really stressful time for her, but I was too young to explain what I wanted or needed.

I changed to injections not long after that, but the side effects were just as bad and the horrible yellow colour of the liquid was enough to make me queasy. I’m still a bit suspicious of yellow foods now!

Two years after my diagnosis, I switched to etanercept. It felt like a huge breakthrough – not only did it work better, it had barely any side effects. I came out of my shell a bit after that, made more friends at school and even had a growth spurt.

Managing school and university

I had been in remission for the whole time I’d been on etanercept, so at 14 I was weaned off all medication. Unfortunately, this led to a really aggressive flare.

This was the first time I’d been old enough to articulate the pain I was in, but I was worried everyone would think I was just complaining. I didn’t want to be seen as ‘the girl with a disease’. Even now, it’s hard to explain what it was like to be in so much pain and feel unable to say anything, but back then talking about it seemed out of the question. A lot of teenagers feel embarrassed by their bodies, but when I imagined my joints full of fluid, I felt grotesque.

Once again, etanercept came to my rescue and the summer after that flare – also the summer of the 2012 Olympics – I will always remember as one of the best of my life. I started training harder at my taekwondo club, which I’d joined after being diagnosed. I strongly believe that this has played a major part in keeping me active – it strengthens my whole body and is a huge stress reliever.

I also set my sights on university, which came with new challenges. Around exam times I would push myself hard, which made my joints achy and stiff.

Luckily, both my sixth form and university allowed me extra time or rest breaks in exams. This really helped, especially because I’ve always liked subjects that involve a lot of writing!

Learning about my passions and finding my first job

After finishing my Masters in 2019, I started working in a publishing house that specialises in healthcare journals. On my first day, my manager gave me an article to edit and it was about arthritis!

The journal I manage now is all about how to improve services and involve patients in decisions. I absolutely love it and often feel inspired by my own experiences. The idea that something I work on could make life easier for people with chronic conditions like mine really drives me.

Strangely, it’s only because of my work with Versus Arthritis and the online magazine Arthur’s Place that I realised I wanted to go into healthcare publishing. It’s amazing that, after years of doing my best to hide my arthritis, it’s gone on to shape some of the most positive aspects of my adult life.

How I’m keeping busy during lockdown

Like most under 30s I know, I was furloughed a few weeks after lockdown started. Unlike most under 30s I know, I’ve been on immunosuppressants for over a decade, so I’m being extra careful and have hardly left the house for six weeks.

Luckily, I was a die-hard introvert before university, so I have plenty of indoor hobbies to fall back on. It’s been really fun to rediscover my love of reading, writing, playing videogames and music.

I’ve also been keeping up my fitness for the sake of my physical and mental health – and just because I love it! Although I don’t have to shield, I’ve mainly stuck to indoor workouts, yoga and, of course, practicing my taekwondo.

In terms of the day to day, I don’t stick to a strict routine. Instead, I set myself a list of things to do each morning; some tasks are productive, some are about self-care (see: ‘pick your clothes off the floor!’ on today’s list) and some are just for fun. It’s not a schedule, but it does stop me from drifting around the house like a lost lamb.

Ironically, arthritis has also helped me fill the time. Writing, recording for the radio campaign and helping out with the Young People and Families service for Versus Arthritis has given me plenty to do, and it’s been really fun to get more involved.

If I were to give one piece of advice to other young people with arthritis, I would say: don’t bottle everything up. Admitting that you have a disability doesn’t erase other parts of your identity, just like pretending it isn’t there won’t make it go away.

I hope that by raising awareness of arthritis, others will feel more confident to share their experiences. Most importantly, I want people to know that, even during the worst flares, having arthritis doesn’t make you any less you.

It’s not alright – it’s arthritis.

By staying quiet we’re keeping arthritis invisible and ignored. Too often, people hold back from talking about what they’re going through. Join us to speak out.

Sign up today to join a community working together to end the pain and isolation

Our services

If you or a family member under the age of 25 has arthritis, our Young People and Families services is here to support.

Our service 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.

Our face-to-face services have changed during COVID-19, but you can find out more about what’s going on via your local Young People and Family service.

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