Lessons in living well with arthritis: Izzie's story

It's easy to forget you're more than your illness, but life improves when you change your relationship with arthritis, as Izzie Clough writes here: "I can be ill and still be me"

Growing up with a chronic illness often felt like living a double life. Except not in an exciting, secret agent kind of way, but more of a self-conscious, isolating kind of way. I was diagnosed with juvenile idiopathic arthritis just after I turned nine, then spent the next 12 years trying to distance myself from my condition as much as possible. I avoided talking about or showing my illness to other people, even when I was in intense flare-ups.

Most of all, though, I wanted to hide my arthritis from myself. I hated using any kind of aids or equipment to make my life easier; even just a simple pen grip that no one else would have noticed bothered me. I had no curiosity about my illness and knew almost nothing about it. I was 21 years old when I learnt that arthritis is an autoimmune condition.

NOBODY WANTS TO "LOOK" ILL

Let’s be honest, when you’re at school the last thing you want is to be visibly different.

I did have some special equipment for my arthritis in secondary school – pen grips, knee and ankle supports – but I never wanted to use them because I was so worried about attracting attention to my condition. It often felt like my only options were aids that were clearly for small children, or aids that looked like they belonged in a hospital.

My biggest nightmare was the chair support I was given when I was 12. It was bright purple and bore a horrible resemblance to a child’s car booster seat. The orthopaedic nurse told my mum that I should carry it around school with me and use it in all my classes. I refused flatly.

Even the less conspicuous equipment seemed like an absolute last resort to me. I was a teenage girl, I was competitive, I did martial arts. In a lot of ways, I felt like my arthritis totally conflicted with my identity.

All of that culminated in me not getting the physical or emotional support that I needed and – whether I’d admit it to myself or not – wanted, all because I didn’t think I could have arthritis and still be an ‘"acceptable"’ version of myself.

Luckily, I now know that accepting my condition and giving my body the help it needs does not make me any less me.

HERE ARE THE THREE THINGS THAT HAVE HELPED ME GET PAST MY FEAR OF "REVEALING" MY ILLNESS THROUGH USING AIDS:

1. Make It Your Own

Thankfully, arthritis-friendly gear that doesn’t look like it belongs on a hospital ward is finally becoming more available. Finding something that suits your style, your home and your personality can help you feel better about using it.

Because of my joints I had to swear off high heels a long time ago – in fact, just around the time that skinny jeans (ugh) and six-inch heels (double ugh) were the height of fashion.

Instead foot-friendly flats have become my "thing" and they suit me down to the ground. Last summer a friend even told me that she loved my signature look: girly skirts with big trainers or walking boots. So now I don’t see it as giving something up, but rather using my clothes to embrace the body I live in.

It’s the same with support bandages, pen or utensil grips and so on – try to get them in a colour you like, or decorate them, and they’ll feel a lot more "you".

2. Realise You Deserve To Be Comfortable

Gadgets are actually really cool. I got a special ergonomic chair at university and I have rarely seen my housemate so fascinated, even jealous. However, that also led to me feeling guilty. I wasn’t that ill, was I? Did I really deserve this extra help?

This is something I’ve always struggled with. I didn’t apply for funding for special equipment or for any extensions on my assignments for the first three years of university, even when I was really struggling. I felt like I wasn’t supposed to have "special treatment" and I was worried that others would judge me for it.

This is a part of the stigma around "invisible" illnesses, especially for young people. I didn’t want to be "that person"… until, eventually, I realised I was that person whether I or anyone else liked it or not. I didn’t ask to be ill, I didn’t have to earn support, and I certainly didn’t need to deny myself help to prove a point.

This wasn’t an overnight realisation, it was something that I had to slowly practice until I felt okay with it, but I don’t regret it at all.

These days at work I have a special mouse mat that supports my wrist, a back support on my chair and a tray to help me carry drinks. Some of my equipment was expensive, either to myself, my employer or the government, but I would never tell someone else that they didn’t deserve support, so why would I say that to myself?

3. Adopt A "Who Cares?" Attitude

A lot of things considered "cool" or "attractive" require us to be uncomfortable, whether that’s trying to obtain a body shape that isn’t natural, squeezing into tight jeans when you’re having a flare-up, or just trying your best to not "look" disabled.

At the end of the day, not all aids can be inconspicuous, just as my illness is not always going to be inconspicuous. That’s when adopting a who gives a ****? attitude can be really helpful.

Chances are, people are going to be far more focused on what you’re doing than the aid you’re using to do it with anyway. Here's a personal example: I wore a heavy-duty ankle support when I went for my taekwondo black belt. Afterwards another candidate, whom I had never met before, came up to me. At first, I was worried he was going to comment on my ankle. Instead, he just said he thought my technique looked amazing – if he'd noticed that aid, he’d forgotten pretty quickly.

Sometimes, of course, the stares and comments come when you’re just going about your daily life. Remember that this is a problem with others' manners, not with you. The way I see it, people look because they’re interested in me, and I ignore them because I’m not interested in them.

Again, it takes practice and sometimes it can be really hard. But, ultimately, you’re the one living this life in this body, so it’s really not anyone else’s business if you do things a bit differently.