An awful lot has happened for me and my campaigning in the last two years. What started basically as an online journal about my experiences, has led to me having tens of conversations every single day with thousands of arthritis, chronic pain and mental health patients, parents of kids with JIA and even doctors and pharmaceutical companies.
In year one, I called myself a ‘writer’. Year two an ‘advocate’. Now, with the launch of Pain.Company and as I continue to add to my list of ‘ambassador’ and ‘patient leader’ titles, I don’t even know what all this is anymore! 🙂 Therefore, I figured that all the new people following me on social media, joining my Facebook Support Groups or stumbling across my writing or work for charities must have a lot of questions too – so here is an introduction to me and ‘Joel vs Arthritis’ at two years old.
Juvenile Idiopathic Arthritis (JIA) – Onset 10 years of age. Diagnosed 12 years of age.
Psoriatic Arthritis (PsA – but referred to as Psoriatic-associated JIA due to me being under the age of 16 with initial arthritis diagnosis) – Onset early 20’s (although rashes were there in my teenage years without being linked). Diagnosed in my late 20’s. I also experience psoriasis and palmoplantar pustular psoriasis under this banner.
Chronic Pain/Neuropathy/Depression/Migraine – we’ll come on to that another time!
My awareness story (in short)
I have lived with arthritis most of my life, with onset shortly before my 11th birthday.
At the start of 2019, after years of planning around my health, I became a dad. This unfortunately also coincided with a short-notice enforced treatment change by my local authority, which took me from a rugby playing, long-distance running, fit and healthy shining example of what you could do with well-managed arthritis to being back on crutches, sometimes, stuck in bed for days. It devastated me. I lost touch with friends, lost my independence and worst of all, significantly impacted my young family at the most precious of times.
After some dark months, where the setback and pain impacted my mental health to dangerous levels, I created my blog, JoelvsArthritis.co.uk, to share my experiences on the advice of family and doctors. What started as a personal diary quickly became a vehicle to raise awareness and advocate for those living with arthritis and other autoimmune conditions.
I had spent 20 years hiding my health challenges – simply changing hobbies, social circles or picking up sticks and moving on with each passing flare and remission cycle, rather than explain what happened to me or where I went. It took becoming a father for me to find my voice.
The momentum of it all has shocked me. I have written for several leading autoimmune and disability charities in my short writing career, been published in print, and am an advocate and ambassador for a number of organisations.
Specialising in writing about parenting with a disability, chronic pain and mental health, I hope that my candid, no-filter accounts of living with chronic illness will make a change in both attitudes and support for those living with autoimmune disease.
In 2020, the Joel vs Arthritis Podcast was launched, which is available on iTunes, Spotify and wherever else you listen to podcasts. In 2021, The Pain Company was launched, a clothing brand to raise awareness of chronic pain and chronic illness and give a voice to the millions living with daily, relentless pain.
My advocacy reasons
After years of planning around my health, I became a dad in January 2019. The same month, people like me with autoimmune conditions in England were informed that we were being switched from Biologics treatments to ‘Biosimilars’ as part of an NHS cost-saving move.
We were given little notice – just two weeks between a consent form thrust under my nose at a routine appointment and the change. However, the information we were provided clearly stated that we could switch straight back should there be any adverse effects.
At the time, I was a shining example of what biologics could do for the quality of life for people like me. I was in a wheelchair as a child – the prospect of biologic therapies not only gave me hope through my childhood, but when a flare became out of control in my 20’s, and I finally gained access to them, they changed my life.
Within two weeks, I was pain-free. Within four weeks, all of my psoriasis rashes had vanished! It was incredible. I promised my doctors that I would make the most of the opportunity, and I did. Within a year, I had dropped 25kgs in weight, played competitive sport, and ran half marathons.
Within a month of the switch, I was in agony. Then the rashes returned. Despite the promises of switching back, it took me 11 months of fighting and crying in doctors rooms to get back to my original treatment. But by then, it was too late. My first year of parenthood had been tarnished—harrowing experiences like not being able to carry my son. Worse still, two years on, I remain in chronic pain despite my arthritis being back under control.
I don’t want anyone to go through what I did. I don’t want anyone to be misled like I was. We need to consider more than inflammation markers, x-rays and £s. I advocate to be a better role model for my son and enact change as to how people’s individual health is managed – where no number on a spreadsheet should overrule what’s best for the individual’s health, career, relationships and mental health.
My advocacy summary
My advocacy continues to evolve, sometimes monthly – but if I had to describe my work in one line, I’d like to think I am known for my brutal unfiltered honesty, my willingness to leave everything on the table as I detail life with chronic illness and parenting, tackling difficult subjects and my enthusiasm to engage and converse with my audience.
What started as a blog, documenting my personal experience, quickly became being asked to write articles for organisations such as charities and health institutions. I discovered I had a writing talent I never knew was there.
Within a couple of months, I discovered through a wave of emails, messages, and support that thousands of people were out there, just like me, before finding my voice, feeling alone, isolated, and unrepresented. With this, I soon started writing not just for my own personal well-being but also for these people.
Now, I write with two audiences in mind – those feeling alone, suffering in silence as I was, and those who have no experience or insight of arthritis and chronic pain, who think it’s all old age, inevitability and swollen joints. So every word I write tries to change those perceptions whilst letting those with arthritis and pain know I see them, and I fight for them.
Today, my social media platforms have replaced my daily life blogging, as my audience has grown. Most of my spare time is now spent being an active part of the arthritis and mental health community, participating in campaigns, championing the work of charities, being interviewed for podcasts/radio as a guest, or hosting my own podcast to raise awareness and writing pieces in my raw style to prompt conversation around certain events, topics or awareness days.
I also run multiple Facebook support groups and am an ambassador for a growing list of charities, organisations and initiatives – of which I hope to expand on.
I have no plan – I go where I feel my voice is needed the most with my advocacy work. I hope that continues.
My proudest advocacy moment
My first published article in print takes some beating. I stared at the magazine for over an hour! It was probably the moment I realised my story could be so much more than just ‘my story’ – it could be a conversation starter that prompts change. That brings people together. That alerts people to something they were completely unaware of. That’s pretty special – and inspiring.
I was fortunate enough for that moment to come very early on in my advocacy journey, so I hope there is much more to come for me – but it unlocked a door in my head and set me on this path, and therefore has to take pride of place.
Before I became a parent, I hid my health challenges. I battled through the good and the bad days, put on a brave face – played the part of the fit and active sporty guy who also played in a band—the guy who had lots of friends and was never home.
Then when I flared and lost my mobility, I burnt everything to the ground. For me, back then, it was easier to quit that hockey club or stop playing guitar in that band and resurface a year or two later as a cyclist or a member of another club than try and explain to all those people why I had to cancel, why I disappeared, worse, why I could no longer walk, let alone run.
I’ve tried 100 different hobbies in my lifetime, living a life that resembles a series of chapters with no common thread – but it means I’ve lost a great deal, too, really good friends being the primary point of pain.
I’d like to think that the medical experience I had in 2019 alone would have pushed me into finding my voice eventually. But, still, I suspect it would have, in fact, pushed me further down that dark hole of isolation in order to try and protect myself from the explanations, the ‘isn’t that what old people get?’, the uncomfortableness and swallowing of pride.
However, I know that becoming a father changed something in me – particularly in those unexpected dark days as I adapted to carrying him up the stairs whilst on sticks. It turned almost certain anger and bitterness into a purpose—a motivation. A desire to change personally and to try and make change for the world my son would inherit.
I wasn’t proud of who I was back then – all twisted and resentful, looking for someone to blame for trying to fix what wasn’t broken medically, the thief that stole my freedom. My social life. So I sure as hell knew Dylan wouldn’t be proud of the person I was becoming either.
I turned the darkest period of my life into something I can’t wait to wake up each day and work on – and I couldn’t have changed a habit of a lifetime without my beautiful boy.
Psoriatic Disease International Ambassador – IFPA (August 2021 – Present)
Rheum for Inclusion Advisory Board Member – National Rheumatoid Arthritis Society (July 2021 – present)
Patient Ambassador – Ampersand Health (May 2021 – present)
Owner – The Pain Company (May 2021 – present)
Ambassador – WORD Day (March 2021 – present)
Podcast Host – ‘Joel vs Arthritis’ Podcast (December 2020 – present)
Writer and Community Advocate – Health Union (March 2020 – present)
(who I have worked with to raise awareness)
National Rheumatoid Arthritis Society (NRAS)
International Federation of Psoriasis Associations (IFPA)
Support Groups Run
https://www.facebook.com/groups/joelvsarthritis – Arthritis and Autoimmune Support Group – A private information and support group for anyone interested in or affected by arthritis and other autoimmune diseases.
https://www.facebook.com/groups/chronicillnessdads – Chronic Illness Dads – There’s a Facebook group for every illness, but what about dads? Whether you consider yourself disabled or not, if you have a long term health condition and somebody calls you dad, this is the place for you! A private group.
You can also find me:
Get in touch
If you’ve gotten this far and think I can help your cause, event, organisation, write freelance for your publication, would like to get a quote from me or permission to use an article. Then get in touch here.
Disclaimer: I talk candidly about my personal health journey, but I cannot help you personally with your health issues. My contact forms and email are not for medical support. Please contact your GP for medical assistance.