How Advocacy Keeps Me Well, Even When I’m Not

Patient advocacy work gives me an outlet to help others living with psoriatic arthritis. But I’ve found that it helps me, too.

Whenever I am asked, “Why do you advocate?” I always answer with the same two reasons.

The first is one many advocates will happily admit: to help others and to try to ensure nobody goes through what I did. The second, however, not so many feel comfortable sharing. It’s a reason that somehow feels far more selfish, although it shouldn’t:

I advocate because it’s therapeutic. It helps me cope and gets me through to tomorrow.

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Before I found my voice

You only have to go back 5 years to find a version of me that starkly contrasts what you see today.

I have lived with psoriasis for most of my life. But it took two major forces from the extremes of my world colliding to find the voice I carry so proudly today: becoming a parent and one of the most intrusive arthritis flares I have ever experienced.

Before the life changing crack across the jaw that is parenting, I was as fit and healthy as I had ever been. After years of trial and error, periods where I depended on wheelchairs and other mobility aids, or an unhealthy cocktail of painkillers, I had finally found a winning combination.

I was accepted on a biologic treatment in my late 20s after a nasty arthritis flare that confirmed I had psoriatic arthritis. Within days, I was virtually pain-free. After a month, almost all of my rashes faded away. For several months, I couldn’t believe it. Whenever I swung my legs out of bed or climbed out of the bath, I waited for the inevitable stiffness and burning ache, but they never arrived.

By my early 30s, I had lost more than 50 pounds, and I finally led the life I always wanted to live. I ran a half marathon and cycled in 100-mile races. I even tried (much to my family’s concern) playing competitive rugby, making my league debut at 34 and cracking two ribs with it. After my first season, which included a fractured ankle, several black eyes, and shoulder injuries, I won the Most Improved Player of the Season award.

For the first time since age 10, I was finally the person I wanted to be. But, of course, it didn’t last.

The darkest of times

Things were going so well for me that I finally agreed to entertain my wife’s idea of starting a family. For a few years, I was terrified of failing as a parent, passing on this limiting condition, or how I would mentally cope if I ended up back on mobility aids.

I knew how much of a burden my fluid disability could be to those around me. The last thing I wanted to do was bring someone else into that support circle — someone who depended on me.

After 2 years of trying, getting green lights from my health consultants, and removing treatments blocking conception, my wife and I were finally expecting a baby by the late spring of 2018.

Dylan Joel Nelson arrived abruptly on January 13, 2019. Our birthing plans went out of the window, as my wife became unwell, and the baby had stopped growing. After a 24-hour induced labor, Dylan was finally helped into this world with a deafening silence a few weeks earlier than planned.

Just weeks before our world completely changed, I was informed that my biologic treatment was changing to a biosimilar as part of a National Health Service cost-saving initiative. As a family of NHS workers, and after being led to believe this would allow more patients to access the life changing treatments I had benefitted from, I happily agreed and signed the consent form based on one caveat: that I could be switched back if it didn’t work out for me.

My treatment changed the very same month that Dylan arrived, and 3 months later, I could no longer run, let alone play rugby. By the summer of 2019, I was back on crutches and trying to navigate caring for a newborn with both arms occupied.

By September, I was dangerously depressed and mentally unwell. I had lost contact with all my friends, as I didn’t know where to begin explaining how that super-athletic guy now had arthritis. I rarely left the house and was waking up nightly screaming, thinking I had dropped the baby, fallen while carrying him, or whatever other nightmare you can think of that involved my pain-ridden body otherwise letting him down.

I didn’t know who I was anymore, and I felt the furthest away from being a role model to my son.

It took 11 months of desperate campaigning to reverse that decision. Even today, I live in permanent pain from that year of sabotage despite my psoriatic arthritis being well-controlled.

I was angry. I felt like I had lost that precious first year as a parent. And more importantly, I didn’t want anyone else to go through what I did. So, with my wife and primary physician’s encouragement, I started writing.

From selfish beginnings

I started a blog called Joel vs. Arthritis around the turn of 2020. My wife came up with the name, which tells you my level of enthusiasm at the time.

For a while, I wrote with everything unpublished. Then one day, remembering how isolated I felt when my disability returned, and I had no support to manage it, I made a post live.

Within days, I was inundated with comments, likes, and shares. In a moment of madness and confidence of unknown origin, I set up a Facebook page, where the conversation continued.

In an instant, and for the first time in my life, I connected with other people living with arthritis. I heard from other people who suffered because of treatment changes with no shared decision making or patient involvement. I heard from other patients who wanted medical professionals to ask what’s important to them rather than what hurts and to consider an individual’s life goals and circumstances alongside test results.

For the first time, I felt empowered as a patient. I felt that I could support others and that, somehow, I could use all these skills from other areas of my life, like writing, to help improve outcomes so that nobody else would need to go through what I did alone.

I suddenly had an outlet for my fear, anger, shame, and all the other emotions I was experiencing at that time that were negatively impacting my mental health. I could share my experiences and help others feel seen. I could talk to medical professionals and help them consider different perspectives and pain points that they may not have considered.

More importantly, I realized just a few months into this most unexpected journey that I had found who I really was: an advocate.

A surreal new world

I’m no longer blogging, but a few years in the Joel vs. Arthritis blog has been replaced by podcasts, YouTube videos, livestreams, support groups, and any other digital medium I can think of to reach more patients where they are, using my limited skills.

I’ve had the opportunity to speak overseas despite rarely leaving my house for a year prior. I’ve been featured in a documentary for World Psoriasis Day that somewhat surreally included having my portrait painted, which at one time was adorning the outside of a building in Barcelona. Despite never playing the game before, I set up a dedicated Minecraft server for people to use gaming as a safe place of escapism and to help their mental health.

I’ve cried on camera and shared my thoughts of suicide while holding my newborn, and still write and talk about it today with tears streaming down my face each time I do, all in the name of awareness, all to educate others and to let those that experience the same know they are not alone and that people are fighting in their corner.

Advocacy brought me friends at a time that I felt I had none. It helped me find people who helped share the burden of my condition, took the pressure off my loved ones, and opened my eyes to the power of peer support. My advocacy brought me a confidence that I never knew I had and shone a light on skills I never knew were there.

And it is for these reasons that I double down on my awareness work when I am struggling.

Advocating through flares

Society teaches us that we shouldn’t do things when we are unwell. For me, it stems back to childhood with echoes of my parents saying, “Well, if you’re not well enough to go to school, you’re not well enough to play that game.”

For years, I felt I had to punish myself when I wasn’t at work, that I couldn’t still pursue a hobby or have fun. Thankfully, those views are changing, and any therapist worth their salt will tell you the importance of doing what you enjoy and that work isn’t the be-all and end-all.

These days, my advocacy is my source of socializing, laughter, fun and, purpose. Advocacy is my therapy and helps me feel in control of something that I’m not. It motivates me in a way that only my son could match. It’s one of the first things I think about when I wake, and it’s almost certainly the last thing in mind when I close my eyes.

In stark contrast to those nightmares that plagued me throughout 2019, the last few years have felt nothing short of a dream. I don’t understand why me. I don’t understand why people listen. I don’t know why, despite the pain, the setbacks and the fatigue, I cannot stop.

However, I do know that advocacy keeps me well, even when I am not.