This was written on World Arthritis Day: October 12
I live with both axial spondyloarthritis (axial SpA), a form of inflammatory arthritis & Crohn's disease (IBD).
What I'm going to share is deeply personal, but I believe there's value in being vulnerable, especially if it helps someone else feel less alone.
Health anxiety
When stomach pains turned out to be Crohn's disease and hip pain turned out to be axial spondyloarthritis, it changed how I interpreted new symptoms.
Whenever a new pain or strange sensation came up, my brain would jump straight to the worst-case scenario, worrying that something else might be seriously wrong.
I'm much better at managing this anxiety nowadays, but those experiences have definitely left their mark.
When your illness becomes invisible even to yourself
When you live with an invisible condition, you often find yourself having to mask what you're experiencing just to get on with life.
But I've found that when you do this for long enough, the invisibility can start extending to yourself too.
You become so accustomed to hiding what you're going through from others that you sometimes stop fully acknowledging it yourself.
People see the outcome, but not the work behind it
People see me skateboarding and doing well, but rarely see the years of setbacks, research, self-advocacy, financial investment and countless hours of work that have gone into getting on top of my health.
It's like an iceberg. People see what's above the surface, but not the enormous amount of ongoing effort underneath, or what it takes to keep doing well.
Learning to say no, even when it lets people down
I've often said that the magic word when you're living with inflammatory arthritis is 'NO'.
Learning to set boundaries and prioritise your health is so important, but it can also mean letting people down.
It's also shown me who the real ones are, the people who continue to show up, understand and support you. Shoutout to the real ones, FR ❤️
Living with a potentially progressive condition
Although modern medicine and lifestyle changes can help slow disease progression, there's still that uncertainty about what my body might be capable of in 10 or 20 years.
Will I still be able to skateboard, snowboard and do the things I love?
It's definitely made me much more conscious of my healthspan, rather than just my lifespan.
Guilt and self-blame
I used to blame myself a lot for developing autoimmune diseases, which feels wild to admit.
I would internalise so many of the narratives online around what might contribute to autoimmune diseases, whether that was childhood trauma or overuse of antibiotics.
I'd spend time ruminating about my past, questioning what I should have done differently, and ultimately blaming myself for getting sick.
I've learnt how complex autoimmune diseases are, and that blaming myself is counterproductive. I'd never treat a friend that way, so why myself?
Financial stress
I couldn't even begin to tell you how much money I've spent over the years trying to better support my health.
Between appointments, treatments, supplements, gadgets, taking time off work and everything else I've invested in, it's money that, as a young person, I might otherwise have been putting towards savings or my future.
Me and my friend joke that instead of inheriting a trust fund, we've ended up with a ‘distrust fund’ from all the money we've spent on our health.
I don't regret investing in my health, but the financial burden and stress of living with a chronic condition can be enormous.
Being diagnosed forced me to have a midlife crisis at 18
Living with inflammatory arthritis has forced me to look beyond simply managing my joints and symptoms, and think about improving my quality of life as a whole person, mind, body and spirit.
It's pushed me to confront mental health struggles, deep-rooted insecurities, beliefs and questions about my identity that I'd carried long before my diagnosis, and to learn how to properly care for myself.
I've also developed an enormous appreciation for life and the people around me. Being able to skateboard again feels euphoric, and even walking without pain is something I no longer take for granted.
I wouldn't wish this condition on anyone, but I can recognise how much I've grown through learning to live with it.
You don't have to face this alone
I've been fortunate to have people who've supported me through some of my most difficult experiences, but I know not everyone has that support.
That's why I'm collaborating with
The Wren Project, which offers free, confidential, one-to-one listening support for people living with autoimmune conditions.
Sometimes, having someone who listens, without judgement or trying to fix everything, can make a huge difference.
Free listening support is available with The Wren Project
1:1 or group support for up to 6 months
The same trained volunteer each fortnight
UK adults aged 18+ with a diagnosed autoimmune disease
