"Figuring out what works for you can take so much time, and that’s okay.”01 May 2020
When a doctor says you have arthritis, it’s not easy news to process.
Max is 24 and nearing the end of his studies to become a barrister. He was diagnosed with ankylosing spondylitis at the age of 17 and is still working things out today.
“The pain I felt was always put down to me doing too much sport.”
I was always the sporty kid at school, so everyone just assumed any unusual aches and pains I felt were my body’s way of telling me to slow down.
I went on holiday when I was 16 and, after the flight, my knee was the size of a football. I didn’t think it was anything serious, but it stayed swollen for four weeks. After about nine days of hospital visits the doctors thought it was an infection. Months later, I could barely use my legs because of sciatica. This finally led the doctors to do more tests and realise it was all being caused by ankylosing spondylitis (AS).
“It was a mess of a year.”
I had A-levels to study for while processing this huge change in my life. I didn’t know what or who I was anymore – I used to be the sporty kid, then I suddenly became the kid who’s too sick to get out of bed.
They put me on so many anti-inflammatories during that time, it destroyed me. I lost weight and they caused a lot of stomach damage. Later, methotrexate made me so violently ill I had to come off it.
Thankfully, things are quite good today. I’m on Angevita (Humira Bio-similar), which works well for me. Exercise also plays a huge role in managing my pain. I found people online with AS who do lots of sport and thought: “If they can do it, why couldn’t I?” I just have to be careful and listen to my body.
“I’d love it to be as easy as: here’s how to deal with arthritis.”
But that’s not how it works.
It’s very personal. You have to try something and, if it doesn’t quite work, you go back and try again. Of course, looking at it in this very logical way is super hard when everything seems to be falling apart.
I took a gap year to learn how to manage my condition and live on my own with it. It was an amazing year - very formative. It taught me how to be happy with myself and my body. (Well, more than before!) But it was also very odd. I cried a lot that year as new things cropped up that I had never worried about, like anxiety, the future, my future.
I’m a member of the Versus Arthritis Young People’s Panel and this is what we often talk about. You need coping mechanisms for when you’re out there on your own.
“The challenges of arthritis change as you get older.”
When I was 17, I was more concerned with how to manage things for myself. Today, I’m starting to introduce other people into the equation, like my girlfriend, housemates, family. It can be a struggle, because you want people to be there for you, but you also don’t want to draw unwanted attention. Nor is there a handbook to give to people about how they can help – it’s as much a learning process for the person suffering as it is for those trying to help.
For example, I haven’t been pain-free in eight years. I wake up every morning and creak down the stairs until I eventually get going. But usually people don’t see that, so it’s easy to forget about the underlying health condition that’s always there.
I’m also thinking more about how my decisions about my arthritis affect other people. If I carry on doing all this sport, will it make my condition get worse? What if I can’t support a family? These worries nag at me, but I’m also aware that “health” can go in an instant, so I need to take advantage of what I’m able to do while I still can. It’s all about balancing my current needs and wants with my future needs and wants.
“Learning to live confidently with arthritis isn’t easy, but it’s possible.”
No one prepares you for the emotional side of arthritis. You think you’ll be able to take the medication and be okay, but it’s not that simple.
You need to give yourself time to work it all out and accept that there’s no “perfect” plan. And while you’re doing this, remember there are people who you can lean on for support – whether it’s friends, family, or all of us who are going through the same thing.
We’re here for you
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