Living with arthritis is to exist in an ever-changing landscape. What I could do yesterday, isn’t what I can do tomorrow, but possibly today. It means I forever have to adjust. Adapt my plans, my expectations, my ambitions. At times, it feels like a never-ending mid-life crisis.
In this article, I talk about the harsh reality of living with arthritis, the roll of a pair of dice, and how those two entities of pain and arthritis gamble with my future, hopes and dreams.
Being the underdog
Underdog: The selection that received a point start in a handicap, i.e. the selection that is unlikely to win.(Burton, 2017)
If I were in a horse race against my friends, I would be the top weight in the handicap. I can write about how arthritis made me who I am, and to an extent, it very much did; stubborn, driven, motivated. But there’s no glossing it up; it has disadvantaged me from the point of onset to today—a quarter of a century. Held me back in school, has repeatedly hamstrung my career, it even caused a delay of over two years in my wife and I starting a family.
It’s an unfair playing field, and I will forever wonder what my real potential was should I not have had the weight of arthritis firmly strapped around my ankles.
Living with disability feels like living with a constant sense of loss, mortality and, in a way, mid-life crisis. A recent Netflix documentary made me realise what I had to let go.
It’s not just the physical disabilities; the pain, fatigue, periods of reduced mobility etc. It’s that I have to scrap for every opportunity, kick against the current that makes living with arthritis such a disadvantage.
On numerous occasions, I’ve had to rebuild my career after a period of poor health, restructure my finances and lifestyle, reconstruct my entire social life and even reassess relationships. All of this makes arthritis feel like a series of mid-life crisis.
A series of chapters
Meet somebody that was attracted to you through athletic ambitions and a year later you’re on crutches indefinitely, I’ve lost lovers to that. Have a rock-solid group of friends that would take a bullet for you, but suddenly you are no longer able to keep up? I’ve lost friends to that. Have a job you love that pays well, but suddenly you can’t be reliable anymore? I’ve lost careers, houses and financial stability to that.
It’s devastating and makes me feel like I am living my life in a series of chapters. Chapters where sometimes the protagonist wins, some they lose, some they have their heart ripped out – except unlike the standard novel format, I don’t know if my lowest period sets up the big heartwarming comeback finale. In fact, I’m pretty sure it doesn’t.
Chasing a passion
Chasing: When a player makes bets they normally wouldn’t because they’re trying to retrieve losses.(Burton, 2017)
Living a life of ‘mid-life crisis’, a rollercoaster as opposed to a gradual upward curve that the Average Joe carves out as they build a career, greater financial stability and security, leads to a ‘boom and bust‘ approach in the chronically ill. During periods of remission, where we feel well, we tend to overdo it. A mix of elation from being able to do things we enjoy again and trying to overcompensate for times when we couldn’t – when we let friends and colleagues down, thus quickly leading to another flare.
We are continually chasing our losses, and I, for one, am the worst for that, especially when it comes to physical activities and work. I have a history of this that goes all the way back to high school.
I missed virtually the whole of Year 9 to poor health and time spent in the children’s hospital. As my condition started to improve in the spring months, I set a target of making the school sports day at the start of the summer holidays. Two weeks after I was able to ditch the crutches, I ran the 1500 meters, finishing 4th or 5th. Looking back, it must have raised some questions with my teachers but never underestimate the power of the mind. I was stubborn and determined to prove people wrong.
Compensating for my health
I’m the same in my work. I hate being off sick with a passion. I stress, worry, and after about a week, I start to get irrational about my job security, my value, my worth. This all comes from a terrible experience in my 20’s, where my poor health was used against me, and I wasn’t strong enough to flag it as discrimination. Regardless, I’ve had my career reset once before because of my arthritis, and I’m terrified of it happening again.
This leads to me having an unhealthy approach to work when I am fit and well. First in, last out. Never switching off, feeling like I have to go above and beyond to make up for the times I let people down – and my arthritis will ensure that at some point, I will let people down.
I’m forever chasing what I want to be, and in times of good health, know I can be, and each time it’s ripped away from me, it feels like a teenage break up. An irrational sense of loss. I’m chasing a dream I can never have.
Tapping out is not an option
Tapping out: When someone loses their entire gambling bankroll and so has to quit.(Burton, 2017)
When most people have a mid-life crisis or traumatic event, they are prone to reckless decisions, whether that be thrill-seeking risks or long term relationship splits. Living with arthritis and a series of these experiences, quitting or running away isn’t an option. Hell, you frequently have to hit the reset button anyway as your condition changes, so why burn the house down with the money inside as well!?
Personally, I find that feeling of not being able to run away from it all as terrifying as I do comforting. It’s the reason I go on, why I get out of bed in the morning, but it’s also claustrophobic. Like a prisoner might contemplate a method of escape but never attempt it, sometimes the reassurance merely is in the option of it being there. Available.
I feel ashamed, but becoming a father increased this feeling of being trapped. Five years ago, if I couldn’t take the pain, fatigue, disappointment and frustration anymore, who would have been impacted? Within five years the world would have moved on and I would be dust. But now I have to quickly dispel those thoughts from my mind, no matter how hard it gets, because of my son.
My reason to go on
Most fathers want to live out their unfulfilled sporting or musical dreams through their kids. I simply want to see him grow up strong and healthy, autoimmune disease-free, and impart the lessons of compassion and resilience I have learnt on this awful journey—nothing more and certainly not my bitterness or anger from the experience. But I can’t do that if I’m in the ground.
Some days I feel like, as somebody living with a long term health condition such as arthritis and surviving, I am the strongest person I know. On other days, when I write paragraphs like that above, I feel like the weakest, most cowardly person I know.
Living with arthritis is a grind
Grind/grinding out: When a gambler is playing consistently and tightly at a game table.(Burton, 2017)
So, with the aforementioned in mind, I must persist, move forward, adapt. I long since gave up on my own dreams; making music, playing sport, so now I continue for my son.
I still fear for my job every single day I wake in pain, and thus my family’s financial security. I can’t promise him riches or a comfortable childhood with expensive holidays abroad or all the things he may want (of all the lines, this one upset me the most as I wrote it). Or that I’ll be able to do everything with him physically he asks of me and make him proud when kids compare what their dad’s do for a living at school.
What I will do, should you ever read this my son, is make you a deal of compromise, as compromise is an important lesson in life you’ll understand one day. Hopefully not as young as I had to learn it.
I promise you I will persevere, be present and never tap out. I will give you everything that you need, even if it isn’t always what you want. I’ll provide you with every opportunity in my power to succeed where I failed, and I’ll toil to make you proud until this broken body of mine finally gives out.
For much like arthritis, life is its own grind and if you have half of my resilience, your mother’s good looks and compassion and all the love around you we’ll provide, you’ll be everything I ever wanted to be.
Burton, L. (2017). Social Responsibility in Gambling: Terminology… [online] The Hub | High Speed Training. Available at: https://www.highspeedtraining.co.uk/hub/gambling-terminology-glossary/ [Accessed 22 Aug. 2020].