“If you're going through hell, keep going”, says Colin Wilkinson, borrowing the sentiment widely attributed to Winston Churchill. It is a fitting mantra for a man managing the reality of living with psoriatic arthritis, osteoporosis, and the consequences of septic arthritis. Churchill's war-time speeches remain timeless in their meaning: overcoming adversity and being the stronger for it. Colin absolutely embodies this spirit.
Colin lives in the north-east of England and is currently shielding in isolation during the COVID-19 lockdown. “I am at very high risk of a poor outcome because my medication…suppress[es] my ability to respond to infection, so in addition to being more prone to becoming seriously ill, I might also be asymptomatic or have unusual symptoms of COVID-19. I also have high blood pressure. I might not know I had the infection until I was seriously unwell”.
Now 44 years old, Colin first presented with symptoms of arthritis at age 18, after leaving school to start work with British Steel, who sponsored him to study chemistry at Warwick University (Warwick, UK). Colin endured a “miserable period where I couldn't work because I had such severe pains in all my joints”. However, he fondly recalls how: “[he] absolutely loved the excitement of working at British Steel, first in the labs, then blending coal (more exciting than it sounds), and then in research. Back then, in the 1990s, the only treatments that helped me were painkillers and anti-inflammatories—much less was known about inflammatory arthritis”. It was amitriptyline that finally helped control the pain. After completing his chemistry degree, he gained a Masters in science communication, before “falling into a job where I helped schools teach science more effectively. Once started, that became an enduring passion”.
“Without a shadow of a doubt”, Colin responds when asked if arthritis had held him back. There was a quiet period, he says, when the symptoms were not overshadowing him to such an extent, but in 2009, while holidaying in Egypt, an insect bite became infected and the pain in his feet turned into plantar fasciitis. The pain spread everywhere. It was at this point that Colin took an interest in learning more about his own condition. He agreed with his rheumatologist to get another opinion. The second consultant diagnosed probable psoriatic arthritis, based on the onset of psoriasis in his late teenage years.
Colin continued to run his own business, helping schools teach science more effectively, leading him to chair the judging panel of the UK Young Scientist and Engineer of the Year Competition at the Big Bang UK Fair (2017 and 2018). There is a hint of what might have been in Colin's story, but he takes what he calls a phlegmatic attitude—“You have to believe that everything will be alright in the end”, he says, adding “otherwise you wouldn't get through the day”. How does he maintain this proclivity for optimism?
“[During] the quiet period, I was very active physically. I enjoyed the outdoors and went on conservation holidays, so I had that, and in some ways consider myself lucky. I have been involved in exciting projects at work, I have a lot of family support, particularly the joy of having my niece and nephew in my life and seeing the world through their eyes. Self-management helps, too. By reading a lot of literature I understand the condition more, which makes it easier to deal with”.
Similarly, during the pandemic, Colin is focusing on staying mobile. While shielding, he has created gardening projects, and established his own distraction technique of making proggy mats (made out of material rags pushed or pulled through a hessian backing). Distraction is very much recommended for pain management, particularly for chronic pain. For Colin, during the worst days, such as when he had septic arthritis, the pain was “all-consuming, the very essence of discomfort, nothing brought any relief … but this redoubled my commitment to working on pain”. Colin played an advisory role in creating the Pain Roadmap for the UK charity Versus Arthritis, a collaborative effort from researchers and people living with arthritis to highlight key challenges in pain research. Colin describes joining Versus Arthritis as a revelation—meeting people who had musculoskeletal conditions and were interested in research—“at the time it felt like finding a second family”, he says. He has since contributed to the creation of the Advanced Pain Discovery Platform, a joint UK Medical Research Council, Versus Arthritis initiative to fund pain research, and as Vice Chair of the Patient Insight Partner network at Versus Arthritis, he remains committed to steering research and peer-to-peer support.
Today, Colin has taken steps to make himself feel as safe and informed as possible. “In the early stages of the COVID-19 outbreak, one of my coping strategies was research but also sharing what I found with friends in an accessible way. This kept me busy and made me feel like I was doing something. It was positively terrifying, but finding out what we did and didn't know, and educating myself on the underpinning science, such as what an R number is, how antivirals work, and how the models work, and being able to help other people reach an understanding of what was happening has really helped me deal with the pandemic.”
Colin is testament to navigating illness with a holistic approach led by a curiosity and individual perspective, finding out what works, and combining medical treatments with non-medical interventions and activities. Immersing himself in the science is an essential part of Colin's therapy.
