"Don't let your arthritis be your excuse. Ever." Interview with Joel Nelson
We are delighted to be speaking (virtually) to Joel Nelson who is the face behind the Joel Vs Arthritis website and accompanying Arthritis and Autoimmune support group on facebook. A true advocate for those living with arthritis and chronic illness, Joel also writes for leading charities and organisations. Joel is passionate about raising awareness and showing what life is like living with a chronic condition and is a fellow WORD day ambassador.
Thank you for joining us for a Q&A. Can you tell us a little about your background and when you were first diagnosed with JIA?
I was officially diagnosed with JIA around the age of 12, but I had noticeable symptoms much earlier. Just before my 11th birthday, my parents were prompted to take me to a doctor as my hip was sore and stiff, and it wasn't improving. A few months later, my right knee was also a problem, and I struggled to walk. It felt like a really long couple of years trying to get answers as my inflammation doesn't show up in blood tests typically, and back then, there was no obvious damage on the tens of X-rays I was subjected to each year.
Arthritis was mentioned a few times (along with growing pains and Osgood-Schlatter disease) because of my family history - I had a grandparent on one side of the family with Rheumatoid Arthritis and a grandparent on the other side with colitis, but the diagnosis finally came when a rheumatologist was brought in to work with my paediatric doctors and noticed pitting and flaking of my fingernails.
What has changed in the world of JIA since your initial diagnosis?
In some ways, everything has changed. In others, nothing has.
I hated being that kid in the rheumatology waiting room that everybody stared at as they tried to work out if it was my dad or me that was there to be seen. On the occasions I was in a wheelchair or on sticks, it was worse. I couldn't hide. I remember pensioners asking me 'should you be here?' when I started getting old enough to go to appointments alone whilst my parents went shopping, and on one occasion, somebody said to my dad, 'what's wrong with him?' like I wasn't even there - or like I was a dog at the vet's. The walls were covered in posters of older people with walking sticks and filled full of those big orthopaedic chairs that used to get me frowns should I ever dare sit in one. It wasn't an environment designed for children and far-flung from the warm, fuzzy feeling of the paediatric wards I was accustomed to.
That aside, there is so much hope now—so much conversation. I remember being told on the ward when I was 14, throwing my guts up daily from the methotrexate and wincing from joint injections, that these miracle drugs were coming and that 'by the time I was an adult, I would have either outgrown it or have this whole new world of treatments available to me'. I thought it was my doctors trying to keep my spirits up. Even in my mid-twenties, when my arthritis flared with a bang, and I developed widespread psoriasis, I didn't believe it. After two weeks of starting biologics and being almost pain-free - seeing my rashes fade away in front of my eyes - I recalled at that moment that doctor's comments and thinking, 'wow - THIS was the miracle you were talking about!'
Biologics and JAK inhibitors have changed people's lives. They've changed mine - and there's more to come. What's more, entire communities are having open conversations around juvenile arthritis now. That was unheard of when I was a child. It was still unheard of when I went to university and had to try and explain why I would be on crutches one week and playing hockey the next. If you are where I was back then, that scared kid who felt completely alone in the waiting room - and the world - there are other people out there in the same position as you who you can talk to.
I went the best part of twenty years hiding my condition - talking about it was better than any joint injection, steroid or hydrotherapy treatment. They all have their place, but you are the only one who lives with your arthritis 24/7 and having a support network helps when you need to talk to somebody that 'gets it'.
And how have things changed personally for you and your condition?
My diagnosis story has been a rollercoaster since the minute I got on this ride - and like many with JIA, I am told to expect that to be the case until my mid-forties, where typically things tend to settle down (or so I'm told). I find it amusing how we are told it will always be referred to as JIA because of the time of onset when most of my arthritis complications have come as an adult.
Officially, by age 14, I had JIA and Ankylosing Spondylitis (AS). I remember getting the 'big talk' about the latter - outlook, what to expect etc. It terrified me. However, after a good few years in my late teens/early twenties, I developed all sorts of issues in my mid-twenties. I developed rashes and had problems in areas I had never experienced pain before; the flare came out of nowhere and ruined everything - my career, relationships, the lot. I was naive. I slipped into a false sense of security with the long remission - to the point where I had almost forgotten I had arthritis. So I wasn't prepared for its return. I was told that my arthritis was clearly of the psoriatic variety and that if I wouldn't have developed arthritis so young, I would, for all intents and purposes, have Psoriatic Arthritis (PsA) but would now be referred to as 'Psoriatic-associated Juvenile Idiopathic Arthritis'.
Around this time, I noticed that nobody was talking about AS anymore. It had never really gotten worse, and my scans were all pretty normal. I'd also stopped being invited to the hospital years ago annually for measurements and lung capacity checks they used to do for AS. A couple of years later, I asked only to basically be told that my neck and back problems would have been the PsA all along - and I took the hints the consultant was giving me to come to the obvious conclusion that the diagnosis of AS was incorrect. That stuck with me. I remember thinking about how we push and fight and chase answers for years, and I was always told how my condition would evolve, so why didn't anyone tell me when they got it wrong? Especially after the big life-altering talk. I shouldn't have had to come to that conclusion on my own.
Today, I have more new symptoms since a big flare in 2019 (as seems to be a pattern for me after each big flare), but unlike the PsA, I don't have answers. Nobody can tell me why I am experiencing pins and needles in my hands and feet, sensations of my foot being in scolding hot water and waves of fatigue that completely floor me, causing me to have had numerous falls down stairs and whilst walking my dog. The consensus is that it's autoimmune in nature, and things like Multiple Sclerosis have been ruled out, but nobody wants to commit to a name.
These experiences remind me that JIA isn't just an 'old person's disease in kids'; it's a lifelong battle. A constant struggle of reading the symptoms to understand what your immune system may be doing on this occasion. And it's exhausting.
We’d love to hear about the journey that led you to starting the Joel Vs Arthritis website?
The short answer is frustration from a bad flare. To make a change.
In 2019, I, like many others, was told they would be switched from their regular biologic to a biosimilar as part of a cost-saving exercise. We were also told (including on the forms we signed) that we could switch back if there were any problems. At the time, I was a shining example of what you could achieve with arthritis when well-managed. I was running half-marathons, competitive 10k's, and I had even taken up rugby, which I hadn't dare try since I was at school. I was the fittest I had ever been and had finally gotten over my fears of starting a family, which were caused by my disease's unpredictability.
Our first child, Dylan, arrived in January 2019, the same month I was switched from Humira (adalimumab) to Imraldi [Imraldi is the bio-similar drug to the biologic drug Humira]. By February, I was in agony - at the worst possible time. What horrified me was that the CCGs blocked my move back to Humira, despite being told we could if there were any issues. My doctors wanted to switch me straight back, but it took months of campaigning and complaints. I was finally returned to Humira by November 2019, but it was too late. The damage was done. I had lost everything - my fitness, my career had been derailed, I lost all of my friends in sporting social circles who had no idea of my arthritis - to them, I just vanished off the face of the earth. I was a shadow of who I was, and worst still, I couldn't help around the house with the new baby. I felt like a burden to everyone and, worse, that it wasn't of my own doing.
During this torrid year, I had also found out through my nurses, physio, GP and others that I wasn't the only one. One doctor told me they were 'overwhelmed' by the number of patients needing help. So that, combined with the realisation that it was completely unhealthy to hide my condition, to lead these dual lives, is what made me start my website and writing. That and my son. I realised I was ashamed of my disability and wanted to be a better role model for him - so joelvsarthritis.co.uk was born.
You write a lot about how mental health can be impacted by pain and living with a chronic condition. Have you learnt anything along the way that may help someone struggling now?
Yes - hiding it, putting a lid on your problems, 'sucking it up' or 'being a man' is just avoiding the problem - in fact, it's almost certainly postponing a bigger problem to deal with down the line. Talking about my struggles, whether that be mental health, pain, parenting, or my condition, changed my life. Without getting into too much detail, I could honestly say it saved my life.
Talking about your challenges, letting those loved ones around you know where you are at, letting people in, makes all the difference. After that, learn your triggers, learn what you don't need to deal with, learn what you must face and remove those toxic elements in your life to give you the headspace to focus on YOU. To manage your condition without all the noise or unnecessary factors. It's something I write an awful lot about and talk about regularly on my podcast.
Can you suggest a couple of your articles on this topic that may help others?
Yes, I've written a lot about this topic. In my article From leader to left-behind - My personal battle with mental health and chronic illness I talk candidly about my personal battle with mental health and how it's closely tied to my arthritis and chronic illness.
Another piece that may be helpful is Pain and Parenting; when the happiest year of your life becomes the hardest where I talk about the challenges of pain and parenting.
Is there anything you wish you had known when you were first diagnosed with JIA?
I wish I appreciated more back then that it was a deal for life. I let long periods of remission cloud my judgement when I was young. Lull me into a false sense of security and abandon plans for its return. That lack of preparedness, in all honesty, hurt me more than the flares themselves. It led me to lead two lives, the flaring Joel and the remission Joel, and it had a massively detrimental effect on my mental health when my arthritis returned. I found myself starting brand new hobbies when well again because I couldn't face going back to hockey, cycling or rugby clubs to explain where I disappeared. I lost a lot of friends, and it was all avoidable.
Be honest with yourself. Be honest with those that care about you as arthritis doesn't just impact you - but everyone around you.
Is there anything you wish your doctors had told you or anything you wish they’d known from your point of view?
I wish I wasn't judged on inflammation markers, swollen joints and X-rays. Some of my worst flares haven't been because of physical indicators but the ones that came at the worst possible time (like my son's birth) or caused more damage to my relationships, careers, and independence than they did my joints.
More needs to be done to support the bigger picture. It still baffles me today, for example, why there isn't a mental health element to the support and treatment somebody newly diagnosed with JIA or psoriasis receives. It's a huge oversight. I hope my awareness work can highlight it.
Do you have any words of wisdom you would want to say to a child or young person who has just been recently diagnosed with JIA?
You can still do pretty much whatever you want. Ok, you're not always going to be able to do certain things at certain times, but that's the same for everybody. In my periods of remission, I proved everyone wrong (I even used it as my fuel!) - and even a perfectly healthy person hits the ceiling at some point, like that friend in school who wanted to be a rock star but never made it. Just don't let your arthritis be your excuse. Ever.
I spent far too long worrying about what I'd turn into, worrying about what people thought, that I missed my childhood. Be better than me and keep proving people wrong.
What are your hopes for the future in the field of JIA, arthritis and autoimmune disease?
The collaboration with mental health services is a big one for me, which I've already mentioned, along with greater consideration of arthritis's lifestyle and career impacts. Alongside that would be an attitude shift - so that arthritis is no longer perceived as 'an old person's disease' or inevitable. For conversations to no longer be awkward, like those who don't know what to say, offering unhelpful comments like 'have you tried yoga or turmeric?' Because once people understand the differences between inflammatory JIA and arthritis caused by wear and tear, then they will appreciate the impact - and once people understand the impact, then our children and young adults start to get the support they need.
It’s easy to list the negatives of having a chronic condition, but many of the children we know with JIA are hugely inspirational, not just in what they achieve despite their condition, but also in their attitudes and behaviour developing resilience, compassion and understanding because of what they’ve experienced. Would you say there are any positives to having a chronic illness?
Despite all my moaning and groaning about my condition, I genuinely wouldn't change a thing! We are so resilient as children, and it's my experiences as a child with arthritis (although many negative or unpleasant) that made me who I am today. I wouldn't wish it on anyone, of course, and every day I scan my own child, petrified that I'll see signs of him inheriting my disease. Still, I know that those experiences are what made me such a determined, confident, compassionate and motivated person. Some might say stubborn or outspoken!
But I have this built-in determination to achieve, prove people wrong, add value and push my limits that I know makes me a positive force once I put my mind to something - and my condition shaped that.
Thank you so much for speaking with us Joel and sharing more of your story.
New for 2022
Joel did an 8 hour live Twitch stream on Saturday 19 March 2022 for WORD Day. We were invited as a guest onto his show, which you can watch here.
Twitch link https://www.twitch.tv/joelvsarthritis
Joel has set up a Just Giving page in support of Juvenile Arthritis Research. You can find the link to that here - https://www.justgiving.com/fundraising/joel-nelson