Three's A Crowd: Arthritis Was Ruining My Friendships
A recent flare reminded me that arthritis is far wider reaching than physical pain and limitations alone. Alongside my independence, PsA deprives me of my confidence and interferes with relationships and friendships. This is my story of how I changed my default behavior and let the world into my arthritis journey.
The man that disappears
I have always tried to be an advertisement for what can be achieved with arthritis. With the right treatment, mindset, and application, of course. When I am in remission, I do everything I possibly can to not only make the most of the opportunity but to fend off the next flare for as long as possible.
Over my 25 years of living with arthritis, I have, at times, felt like I am two people. Disease-free, I play contact sports, have ridden in 100-mile cycle events, and run half-marathons. When I get my 'new leases of life', as I call my remission periods, I use the opportunity to stick two fingers up to autoimmune disease and say yes to everything. I am confident, outgoing and my social circle swells.
When my disease is active, however, I am a shell of my former self. My flare can jump me out of nowhere and just like that, everything is taken away. My symptoms can range from moderate pain to not being able to get out of bed. Sport and physical activity are certainly out of the question. Within a few weeks, I am starting to put on weight, lose muscle tone, get depressed, and realize I might have gone several weeks without seeing anyone socially. To friends and those acquaintances through hobbies, I have seemingly disappeared off the face of the earth.
Testing my limits
"Why can't you just play chess?" Somebody asked me this once and I see the logic. I choose to have physically active hobbies when healthy. I always have done and to understand it, you need to know a little about my history with arthritis.
Arthritis first presented around my 11th birthday. I missed entire summer holidays in the hospital, sat and watched sports days beside the teachers and, at times, had to be pushed around in a wheelchair by my friends. It was a miserable time and my first real experience of being disadvantaged due to PsA, so when I had opportunities to kick a ball around with friends, I went all in. An example is: when I was 13, I had missed most of the year due to poor health, only to qualify for my county's cross-country under-16 running championships at age 14. I could run again, so my word I was going to run like there was no tomorrow!
Physical activity was always a good way for me to benchmark my health. To know I could still get back to doing what my peers could do. As I grew older, it helped me to understand when I was back to where I was before the most recent flare. How much damage had been caused by the event?
This approach was a good gauge until the last 18 months. Where flares have merged into one, complications have increased and my ability to bounce back has failed to materialize in between periods of respite. The last six months have made me realize that those traditional go-to hobbies may no longer be possible. That hurts more than the pain itself.
It doesn't have to be this way
My approach meant that I was destined to be isolated during flares. The constant need to compete, be treated equally, and prove people wrong when they said I couldn't do something meant I hid my health issues. High school was unavoidable, due to being in a wheelchair, but I went through three years at university with close friends having no idea about my PsA. I didn't want to be judged by my disability.
When friends asked why I had such a large dorm with wide doorways and a seat in the shower, I would joke about knowing the right people. When I was sick - I went 'home' for a few weeks to see family. In reality, I was either in the hospital or stuck in bed in my room with the lights out until people stopped knocking on my door.
The same went for sports. I didn't want a 'sympathy pick' or to get praised on performance because 'I did well, considering', so I disclosed nothing.
However, this all meant that when I was unwell, I couldn't reach out to anyone, ask for help, or talk about it. Nobody understood. When healthy again, I would be fearful of returning to a club in case I had to explain where I went for half a season so I moved on to something else. I never laid down foundations.
It depresses me to think of all those amazing people I met over the years but then, six months later, never saw again due to the approach I took to cope with my situation. It's one of my biggest regrets.
Changing how I made friends with PsA
I have fought the physical boundaries of PsA for most of my life, so why was I letting it keep me from having friends?
In 2019 I decided to change. I started writing about my health, launched my website, and was soon appearing in local newspapers and on TV as an 'arthritis advocate'. The cat was well and truly out of the bag. Yet, despite going through one of the worst flares in my adult life, I feel like I have more support now than ever. This support may not mean in the traditional sense of face-to-face friends (that will take some time after all the bridges the 'old me' torched), but in terms of the arthritis community and old friends reconnecting with me on social media.
This happened because only now they understood what I was going through, why I pushed them away - and I finally understood the difference between sympathy and empathy. I assumed people would take pity on me but that wasn't the case at all.
I took a leap of faith to change the behavior of a lifetime. If this story resonates with your situation, I'd encourage you to take one too and talk to someone.
Have you had a similar experience?
How do you plan to recognize PsA Awareness Month?