Surfing and learning ways to thrive with arthritis

18 June 2021

Angharad, 27, was diagnosed with SAPHO syndrome (a chronic condition that affects the skin, bone, and joints) three years ago.

Here she shares her experiences and chats to Toby, an adaptive surfing coach from Surfability, about living with the mental and physical impact of arthritis.

Surfability is a community company working to make surfing as inclusive as possible for people with additional needs.

“Bit by bit, the way people saw me, and how I saw myself, changed from sporty to lazy.” - Angharad’s story

I used to love sport growing up but when my back pain started around the age of 15, the pain and fatigue meant I would regularly find ways to actively avoid exercise.

At Surfability, young kids were being taught that ‘disabilities’ can be adapted to.

The boldness and the thrill of the kids taking to the waves made me reflect on the limitations I had placed on myself.

“Surfability has a collection of adapted boards to ensure that all who come with a desire to surf can do.”

The organisation provides a safe space where you can try something new and step out of your comfort zone, which is integral to living a dignified life.

By opening up new possibilities, lessons with Surfability can change your perspective, as well those of your family and friends, who are invited to be part of the lessons.

After reading more about Surfability, I learnt that one of their coaches, Toby lives with ankylosing spondylitis. Diagnosed in 2015, Toby continued coaching at Surfability and he discovered how the sport has helped him live with his arthritis.

“I started to do my own research on back/spine conditions and came across ankylosing spondylitis (AS).” - Toby’s story

It took me a while to get diagnosed. I had regular visits to the doctor, who sent me to a physiotherapist, who then sent me back to the doctor (this went on for 2 years).

Armed with my research, I suggested to my doctor that it could be AS. About 6 months later, a positive test for the HLA-B27 gene, and two MRI’s later, I got my diagnosis.

“I have found surfing to be very useful in helping me to live with ankylosing spondylitis.”

Surfing encourages me to have a healthy lifestyle and I also go to the gym regularly.

My gym sessions normally consist of mobility work which focus on working different parts of my body together, instead of doing exercises which work only one muscle.

Understanding my posture has had a big impact. I’ve also made changes to my diet, as some foods can increase inflammation for some people. It’s been trial and error, but it’s made me more aware of what works for me. 

“One of the frequent challenges of being a coach is having a flare up during a busy period of lessons.”

My flare ups normally consist of chronic fatigue, pain in my lower back and hips, stiff joints, occasionally costochondritis and most recently uveitis.

This can make giving lessons uncomfortable for me, but being in the ocean, wearing a wetsuit (which seems to support my joints as it acts like a compression suit) and helping people surf is maybe the best activity.

Teaching means I am constantly active and I’m not fixating about how much pain I’m in.

Seeing the smiling faces, hearing the laughter and contributing to people’s joy, gives me inspiration and makes me realise it’s not all doom and gloom.

“Surfing, to me, has been a way to relax, unwind and escape.”

Despite surfing being a physical sport, I’ve always found that when I’m in the sea, sitting on my surfboard, I have a sensation of peace. The stresses of everyday life don’t seem to burden me as much. My mind is only focused on what I am doing at the time.

The physical side of surfing has proved beneficial as it requires different types of movement. From carrying the surfboard down the beach, paddling out through waves to navigating your way across the changing surface of the water.

Surfing isn’t all about standing up on the board or getting a big wave. You can do as much as you can manage and still have a smile that lasts for the rest of your day.

It’s about freedom and enjoyment.

“For me, doing something is better than doing nothing.”

I do what I can and adapt, depending on what I feel I can do.

Motivation to exercise can also be a challenge, so I try to focus on activities that I enjoy and that are fun.

Adapting my mindset has been the biggest thing for me, my flare ups would make me feel very negative towards most things. I took steps to be aware of how I was thinking and how I could change my thinking.

For example, if I felt like I couldn’t go to the gym one day, that’s fine, days off are needed.

“Learning to live with my arthritis was really difficult at first.”

I spent a long time feeling ashamed and embarrassed. I thought that people would treat me differently and think that I'm disabled, or they might think I was lying because of look ‘fit and healthy.’

I’ve had people shout at me on the bus for not giving up my seat, despite being able to barely walk. People have called me lazy because even simple movements make me feel exhausted or friends have made seemingly harmless jokes about me being crippled.

I’ve had to learn to be open and honest about my condition when I need to be. I want to use my journey with arthritis and my experiences in adaptive surfing to introduce people with arthritis to surfing and share how the sport can be a form of therapy and rehabilitation.

“Be inspired to take control.” - final words from Angharad

Toby has inspired me to override my fear and uncertainty of exercise, to not give up if I flare up - but instead adapt and get into the water and try surfing!

A lot of my life has been trying to advance despite arthritis. What Toby does is to demonstrate how you can work with the challenges of arthritis.

He emphasises the importance of being kind to yourself and not overly cautious. To be more educated about exercise and most importantly to enjoy the experience.

Versus Arthritis has amazing resources on ways to exercise, including on how to get started and what types of movement may work best for you.

Toby and I may have different careers, but we’ve shared our challenges and hopes together, and we’ve learnt how to grow together.

Versus Arthritis provides opportunities to connect with other people with arthritis, which is so vital when you’re first diagnosed.

Read other people’s stories about how they live with arthritis. These are a great reminder that you are not alone.

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