My name is Joel Nelson, and I am an arthritis, psoriasis, chronic pain and mental health patient advocate from Norwich, UK.
I was first diagnosed with Juvenile Idiopathic Arthritis (JIA) around the age of 12 after its onset when I was just ten years old. In my 20s, and after a stressful life event, a widespread psoriasis outbreak confirmed that my JIA was of psoriatic nature and is now commonly referred to as ‘Psoriatic-associated JIA’. However, my condition would essentially be called Psoriatic Arthritis should I have first experienced symptoms in adulthood.
My route to where I am today is not one of traditional advocates. I haven’t always been so forthcoming with my health challenges – in fact, I spent most of my life actively hiding them.
I spent an entire high school childhood with achievements, regardless of how simple the task, compared to my disability - being told how I ‘did well, considering’. I wanted to be judged on my accomplishments, not by how many barriers stood in my way compared to others. So as soon as I got out of a wheelchair and had my first real period of remission around sixteen, I actively tried to mask my limitations through university and into adulthood.
Then, in 2019, and with the arrival of my son, everything changed.
I had spent two years planning to start a family with my medical team. Since getting access to biologics, I played rugby, competed in 100-mile cycling events and could run a 40-minute 10k. I felt invincible, and as a family who worked in the NHS, when thousands of patients were told in England that our biologics were being switched to biosimilars at short notice to save money, I reluctantly accepted the change on the agreement that I could switch back. In that hope, more could access these treatments with a reduction in costs.
However, within just a few weeks, I was in agony and trying to navigate caring for a baby on crutches. A baby I couldn’t carry up the stairs or change nappies for – a baby we had planned based on me being the fittest I had ever been before the treatment change and stress of starting a family.
I had no support network, no Plan B, and as the tormented disabled dad I now found myself, it pushed my wife and I’s relationship to the limit.
When we got the green light to switch back to my original treatment after 11 long months of advocating for myself, the damage was done. I was told I was left in constant, possibly permanent, pain despite the active disease and arthritis flare subsiding. I had lost my social circle and friends and realised for the first time how difficult it was to access treatments and support after years of remission, and no longer a child with parents to advocate for me. As an adult diagnosed many years ago, there was no clear pathway to support.
After several months, and at the advice of my GP and wife after I accepted that I was clinically depressed from my situation, I took up writing to help with my spiralling mental health. I almost instantly found my voice – and a community I never knew existed.
It took a long while to find the right path, but I finally found what I was always destined to do.
I don't want anyone to go through what I did. I don't want anyone to be misled, feel like they are in the dark or don't have a choice, or a voice when it comes to their own care.
We need to consider more than test results, what hurts and the cost of treatment when it comes to patient care. I fight for shared decision-making, multidisciplinary approaches that include mental health support and treating the person as a whole, rather than just the symptom.
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 screen should overrule what's best for the individual's health, career, relationships and mental health.
Advocating is not only my therapy, a way of coping and a rare constant on this rollercoaster of dynamic disability and fluid circumstances that arthritis puts you on. It is also the highest honour you could ever have bestowed upon yourself as a patient. To use skills I never found a way to utilise in my career – my writing, storytelling, natural speaking skills and passionate determination – to highlight other patients’ issues and pain points. To be a voice and representative for a community.
I take the responsibility very seriously, and, of course, it comes with its pressures. Still, second only to becoming a dad, I can genuinely say it’s the greatest and most rewarding thing I have ever done.
Joel vs Arthritis LTD (also t/a The Pain Company)
Norwich, England, United Kingdom
Disclaimer: I talk candidly about my personal health journey, but I cannot help you personally with your health issues. I am not a medical professional and in no way claim to be medically trained. My contact forms and email are not for medical support. Please get in touch with your primary healthcare professional for medical assistance.
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