Living With Chronic Pain
My story following a 16-year battle with fibromyalgia
It all began in 2005, I was an 11-year-old kid in school just playing around as usual. I tapped a friend on the back and she chased me around the playground, then onto the grass at the lower half of the school.
And then the chronic pain again.
I tripped over a ditch in the grass and sprained my left ankle, a pain I had never known before but would stay with me until today. As I left the playground with help from my teachers, I expressed my displeasure of the pain, another thing that would stay with me. My mother was called in and I described the event, but never displayed the level of pain I was in. I, for some reason, feared her reaction so I hid my true feelings.
As time passed through my teenage years, I kept internalising my pain as I saw it as a sign of weakness, something I thought men should not display publically. The pain grew through my left leg during this period and I, stupidly, joined the school rugby team as a means to fully test my pain barrier - test my strength against weakness. My family were still clueless about my pain, I would try to act as normal as possible around them to stave off the pain's scent; something I knew I could not continue if pain kept progressing...but it did.
Leaving school at 16 to join a sixth-form college was where my downfall began. I had dreams of being an analyst in London, growing my wealth and retiring early; studying maths, business and economics to secure my path to university. The pain reared its ugly head more fiercely during college, spreading through my right leg and hips, making the easiest of movements challenging. It affected my studies greatly, causing me to almost fail my first year which resulted in it being retaken; but by this time I was no longer interested in studying.
I dropped out of college during the retaken year as my pain became too much for me to manage. It was 2012, I was 18, with no education, job prospects or future ahead of me, or so I thought. My mother helped my pluck up the courage to look for work during the year and I landed in a training course for retail workers, for the time that I was there I felt happy...ish. The job at the end was working in a small shop some 10 miles away from home, long commutes coupled with unpleasant customers took its toll. It was the Wednesday of my second week in the job when I came home tearfully with severe back pain, I had to quit my job and I was back to square one. Doctors would later diagnose a degenerate disc in the base of my spine, adding a new term to my vocabulary - fibromyalgia.
Fibromyalgia, the bane of my existence, severe chronic pain in areas of the body, and by 2013 it had inhibited my legs and back, never relenting, always worsening. Between 2013 and early 2015, I became a hermit, confined to my bedroom and rarely leaving the house. Playing video games to pass the time was my solace and escape strategy, particularly Cities: Skylines, a city building game. But I knew that I could not do this for much longer, the pain's mental burden was all encompassing, which led to me attempting suicide in August 2015. Luckily my mother found me in time before I enacted the permanent solution, saving me from myself. We spoke about happiness and my future, what I really wanted to do with my life. Roads, people, cities - the three words I mustered would change my life for the better. I steered a course of action, to become a transport planner and escape my burdens.
With a plan in mind, I set to work on what would be a six-year journey into the unknown. As I had dropped out of college, I completed a similar one-year course to get myself into university. I passed with the highest possible grades, which relayed to me that I still had the academic aptitude. But what about the physical side...well that didn't go so well. In 2016, after the first day of lectures at university, I returned home and collapsed upon entry, I remember my mother being hysterical, calling for ambulance multiple times. Medics had to use intravenous morphine to bring back my consciousness, leading to a one-week stay in hospital to recover. Due to this incident I had to take a year's leave of absence to fully recover, but I wasn't recovering, I have never recovered.
At the time of Trump's election in November, I was in hospital again after another collapse and I was beginning to think that my dream was over, that I was back to square one yet again. However, I returned to university in 2017 where I endured the best four years of my life. Geography, the study of the world and its processes, seems boring for some but for me it was enlightening. Research trips to Rotterdam, Berlin, China and Tokyo were the highlights, visiting places I could only dream about, where I could truly flourish in my academic role, and my pain mitigation strategy of playing video games was still holding up as the pain increased. Although, when I started my masters degree during the pandemic in September 2020, these strategies began to take its toll on me.
When you can't leave the house during the lockdown but you have a degree to finish, the mental toll can be overwhelming, which it was for me. I had a very hard time mitigating the pain and was practically bed-bound in February 2021. However, I eventually completed the long slog of a degree in September and looked forward to the hard-earned job as a transport planner in October. During this break, I developed my pain mitigation strategies and worked to increase my mental and physical strength for the rigors of working life. I thought I was ready...
I lasted three days.
The pain increase was greater than anything I had previously encountered, spreading to the soles of my feet and into my shoulders. My mitigations crumbled, my dreams shattering before me, thinking about square one yet again. But my employers give me all the time I need to get better and in that time, a month has passed, November arrives and I'm still not better. That's the problem, will I ever get better? Reading this you will understand I have never gotten better in 16 years...but there is always light at the end of the tunnel and I want to see where it leads. I will continue this struggle with fibromyalgia look towards a better future.
I hope my story helps someone currently living with chronic pain and in particular, fibromyalgia.
Thanks for reading,
- Alex Johnson