Autoimmune Disease, Arthritis and the pandemic - By Jack Spooner
As a musician during the pandemic, it goes without saying that there’s been a big strain on my health mentally with not only the absence of social contact and the opportunity to meet new and interesting personalities, but also the inability to meet with my band to rehearse and perform around the country. But there’s a struggle that I have to overcome on the daily, in the form of my physical disability, which I try not to talk about unless absolutely necessary, to eliminate the risk of sounding like I’m making excuses, setting limitations on my work output with the mentality of “I only achieved this because…” as opposed to the “I have achieved this despite….” work ethic I’ve been trying to adopt since my first exam season in 2016.
Discovering my condition
When I was 16, I attended a firework display with my girlfriend at the time, and noticed my hands turning yellow, numb and painful, later to be found to be Raynaud’s phenomenon. A week later, I went to a trampoline park with my brothers and experienced the most painful stabbing and pinching pain in my back, causing me to breakdown in tears and seek medical help. As someone with extreme trypophobia too, a set of blood tests to diagnose me was not the ideal situation to have got myself into but before I knew it I was diagnosed with Rheumatoid Arthritis and later Mixed Connective Tissue Disease, an autoimmune disease. I was the youngest person in my local hospital to have this.
What this means for me is that not only do my extremities need to be warm to function, but my muscles and joints will randomly assign certain days to disable themselves, and therefore me. I have been given crutches and ergonomic equipment and have had to invest with my family in a car and thermal clothing to limit these days, which can also be caused my stress and anxiety, but ultimately my life has turned into somewhat of a lottery. These odds and chances are massively biased once you chuck COVID-19 into the mix, as someone who is high risk and consequently terrified of any public space or social meet.
How does this affect me as a Musician?
The main challenge with my condition has always been how to problem solve and organise myself best so I am the most prepared for any day to be cancelled because of my limited movement. I have food in my room to eliminate the possibility of not being able to stand up, and I will always make the most of my body functioning normally by going on walks and limiting how long I spend inside. I’ve also recently started on antidepressants to not only help with my depression, but to limit my anxiousness, which ultimately causes a lot of physical issues and muscle ‘flare-ups’ too.
I usually drive to events and meetings rather than walking or taking the bus, to limit the time spent outdoors in the cold and as a result, I often can’t join in and drink at gigs I attend and feel like I have to have drinks that look alcoholic just to fit in socially. This isn’t to say I don’t drink but considering alcohol doesn’t gel well with my medication programmes, I have to be very careful with what I drink and when.
With regards to myself gigging and performing, I struggle physically and the event my band Caravella played at with We Are Parkas was no exception. Loading in, my joints were playing up and my hands were frozen despite the car journey. The heavy equipment and extensive bending down were painful, and I had to take pain killers to try and combat them. This only scrapes the surface but Moles were really understanding and let me boil their kettle and grasp a hot mug to defrost my hands so I could play.
I wouldn’t suggest many changes to venues and stages to combat disabilities like mine, mainly due to the unrealistic nature of the requests! It is impossible to make a stage warm without causing everybody else to overheat, and it’s not an option to eliminate some of the anxiety surrounding timetables and timings but I do think that it is expected of musicians to set up by themselves and pack down by themselves too without any prior thought of physical disability.
Although the pandemic has been extremely dangerous for me and the scares of death and hospitalisation have been really high, it has benefitted me more than most people. By forcing everyone to stay at home, the virus has put me on an level playing field for a while, where I won’t be missing out if I can’t attend lectures, meetups and gigs. My band have been doing really well recently, achieving 1000 streams in 6 days on their recent single, and my grades have never been better! I’ve been on several radio stations and my song writing has never been better!
All in all being a musician with MCTD is terrifying enough as it is without the pandemic, but I’m just working through it and hoping something will come out the other side in good shape!