Lessons in living well with arthritis: Joel's story
'A constant reminder of need' is what Joel describes as living with arthritis
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 of age, 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 that lives with arthritis every single day, however, it’s also a measure of my disease.
A measure of my disease
In conversations around my arthritis, I often refer back 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 impact the disease has 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’. Nothing like stories of laying in traction, knee injections, and hideous reactions to experimental drugs all 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 one hand, I campaign for arthritis awareness, to break the stigma, to give the general public a glimpse of what living with a chronic illness is like. On the other, I have been uncomfortable with using supports and aids ever since I was a child - this makes me uncomfortable and leaves me feeling like a hypocrite.
Perhaps it was because of the age of arthritis onset, right before puberty. 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. 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, appear ‘normal’, but it was at the detriment of 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 next week. On one occasion, when an afternoon pint with some friends from my sports team turned into a full 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 I didn’t tell anyone. I just locked my door, turned the phone off and rode it out. Looking back, it was naïve 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 I 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 along when I knew there were things I could do to help myself. 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’s 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, isolation, never materialised. Instead, I opened the door to a whole new world - a community of people in the same position as me, many 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 I had of waking up one day with no idea how I was supposed to care for my baby on crutches. I hadn’t needed them for ten years, after all, 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. What is more, I do it openly and share my journey on Instagram and Facebook. I wouldn’t say it comes naturally to me as 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 I was 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 of 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.
About the author
My name is Joel Nelson, and I have lived with arthritis most of my life, with the onset of Juvenile Arthritis just before my 11th birthday.
In 2019, I created my blog, JoelvsArthritis.co.uk to share my experiences, raise awareness and to be an advocate for those with arthritis and other autoimmune conditions. I have since written for leading arthritis charities and other health organisations, specialising in living with chronic illness and pain, parenting and mental health.