A constant reminder of need

Originally written as a blog post for Arthr in 2020, I share what I have learnt about my life with arthritis, the unhealthy relationship I previously had with the disease, and the adjustments I needed to make to live with it.

An uninvited companion

Arthritis has a funny way of reminding you of its presence. Having lived with the disease in numerous evolving forms for approximately 25 of my 36 years, it's never far from my mind.

It's often referred to as an 'invisible illness', a term that fills me with frustration each time I have to write it due to negative experiences over the years. Although we can live in pain 24/7, battle fatigue, discomfort and challenges ranging from getting to sleep at night to getting ourselves dressed in the morning — there isn't much about arthritis that's invisible to me.

Arthritis is that unwanted guest at the party. The reflection in the shop window when you're having a bad day. The cold at Christmas. It's always there, even when the rest of the world cannot see it, and like a painful game of whack-a-mole, just as one problem is resolved, another seems to present.

Still, except for psoriasis, it's often the supports and aids that we use that the rest of the world sees and accepts, over the more significant issue of pain and inflammation, disappointingly. As somebody who lives with arthritis every day, however, it's also a measure of my disease.

A measure of my disease

In conversations about my arthritis, I often refer to when I was in a wheelchair as a child. It acts as a good wake-up call for when people are not getting the disease's impact on my daily life. It's also a great mental image to snap people out of that initial loop they seem to get in as they try and wrap their heads around their false preconceptions of arthritis being an 'old person's disease'. There is nothing like stories of laying in traction, knee injections, and hideous reactions to experimental drugs before the age of 13 to shatter their unconscious bias!

But it's also a gauge I use for myself when things are bad in terms of pain or limited movement. 'At least I'm not back in a wheelchair', I tell myself when I have to resort to crutches — 'at least I'm not back on crutches', when I first start using a walking stick again, and so on. It helps stop the spiral of panic and fear that comes with a flare or worsening of the condition, if nothing else. After all, those of us who have lived through several periods of lengthy flares no longer take the remission periods for granted. Who knows if that next flare will end?

An unhealthy relationship

Over the years, I have realised that I have an unhealthy relationship with mobility and daily living aids. On the one hand, I campaign for arthritis awareness, to break the stigma, and to give the general public a glimpse of what living with a chronic illness is like. On the other, I have been uncomfortable using supports and aids ever since I was a child — this unsettles me and leaves me feeling like a hypocrite.

Perhaps it was because of the age of arthritis onset, right before puberty. Then, later in life, almost certainly because I became a man who didn't want to show weakness in competitive work and social circles; either way, it was wrong and worse, my health suffered because of it.

High school wasn't fun for me. A combination of suddenly being in a wheelchair, falling off my crutches in the courtyard or having to swim with the girls whilst my male friends were playing football. Either way, it changed me. So when I headed off to University a week after my 18th birthday, I reinvented myself. It was the last time I openly told anyone about my disease for over 15 years.

This approach might have made me feel less vulnerable, draw less attention, and appear 'normal', but it was detrimental to my health. I hid my wrist supports and braces, only putting them on at night. I skipped taking my Methotrexate on weekends that I knew I'd be drinking, leaving me in agony the following week.

On one occasion, when an afternoon pint with some friends from my sports team turned into a whole night out, I felt so sick from the mix of alcohol and the cocktail of anti-inflammatories and painkillers that I had to run back to my room to vomit. I sat and sobbed for half an hour or so before heading back to the bar, laughing off my absence by saying I bumped into a friend outside. I was very unwell for two days after that and didn't tell anyone. Instead, I locked my door, turned the phone off and rode it out.

Looking back, it was naive and stupidly dangerous. But I was young and trying to keep up appearances whilst managing a life-changing illness.

A time to change

In 2019, I had another considerable flare and was tired of making excuses. Excuses to another sports team about my absence, excuses to friends of a decade or more who couldn't understand why I always cancelled, I was tired of struggling alone when I knew there were things I could do to help myself. So at my lowest point and just months after becoming a parent, I took a doctor's advice to start writing things down. That soon became a blog, and it changed everything.

Within weeks, thanks to social media, most of my friends (and even some family who were still in the dark) knew the truth. I was terrified, but it was also a massive weight off my shoulders. Even the things I was frightened of, questions, judgement, and isolation, never materialised. Instead, I opened the door to a whole new world — a community of people in the same position as me, many of who were also hiding in the shadows. I didn't just find my voice but a voice for others who were earlier on in that journey or didn't have the monumental life-changing scenario of waking up one day with no idea how I was supposed to care for my baby on crutches. After all, I hadn't needed them for ten years, so I had never planned for that scenario or knew where to go for help.

A year on, I use orthotics, wrist supports, a stick as needed, jar openers, heat patches, dictaphone, voice-to-text software; the list goes on. Moreover, I do it openly and share my journey on Instagram and Facebook. I wouldn't say it comes naturally to me yet — I still break out in a cold sweat when I find out a work colleague or somebody I used to play rugby with has started following me, but I'm sticking with it.

More importantly, my health condition is now as well supported as when first diagnosed and before high school left its mark. Supports and aids allow me to stay in work and be a fully involved parent, and I would encourage you to do whatever you need to do to get by, to have a fair crack at life. You deserve it.

My constant need for support never changed. My attitude and self-awareness did. My arthritis only became invisible because, for a large part of my life, I let it. I won't allow that to happen again.

Please consider hitting the 'follow' button if you've enjoyed Joel's words or support what he's trying to achieve. It costs nothing but makes a big difference in helping people find their work.

You can also find Joel on:

Facebook / Twitter / Instagram / Twitch

Or for a full list: https://linktr.ee/Joelvsarthritis