fibromyalgia, 2020
Making the invisible, visible.
Fibromyalgia is a condition that causes widespread pain and extreme tiredness. It is estimated that approximately 3-6% of the population suffer with fibromyalgia and symptoms and severity of pain can vary from person to person.
Fibromyalgia is an invisible illness, and to some it is disabling. I produced this series to represent the internal pain of fibromyalgia outside of the body, making the invisible, visible.
my story
At seven-teen years old I was an active member of the army cadet force, studying A-Levels in college, had just gotten my army selection dates and I woke up in pain. At this part of my life pain was normal, pain was something I could manage, just six months previously I had completed my silver Duke of Edinburgh award, finishing the three-day hike with a sprained knee that I had managed to conceal since the first few hours of the expedition. A year prior to this I had walked, marched and ran on a broken ankle that was so swollen I could barely fit it in my combat boots, two weeks later the cadet camp had ended and I finally went to the hospital for X-rays. Pain was something I could manage. But this pain wasn’t. Waking up at 17 and being unable to move stand or move without excruciating pain wasn’t something I expected to experience, there was no prior injury so we suspected a trapped nerve. After a week of no improvement with over-the-counter painkillers my mother made me an emergency doctors appointment. Two months and two more emergency appointments and a Codeine prescription later and I withdrew my application for the army, we were no closer to diagnosing or managing the pain.
After three months my back pain began to spread, it was now in my hands and my joints and making life difficult. I was tired all the time and would spend hours laying in bed after any physical activity. A course of blood tests showed my childhood anaemia and vitamin D deficiencies had returned and after a severe bout of menorrhagia I was on a strict medication regimen of seven pills four times a day. The anaemia and menorrhagia became controlled but the pain persisted and one day after college I was in the emergency department, I had lost feeling in my legs while on the bus home and couldn’t walk. The feeling came back, but now I had a new symptom. I could no longer sit in the same position for longer than a few minutes without intense pain and then numbness. We switched medications once more before I made the decision to stop medication. At this point I was having weekly doctors appointments, and missing a lot of college. Almost four months from the day I woke up in pain and I was sitting in an office at my college with the deputy head of A-levels, I was being removed from one of my courses two weeks before exams due to poor attendance.
Eleven months, three specialists, dozens of blood tests and over 30 GP appointments from the day I woke up in pain and I was eighteen and I had a diagnosis. I was also depressed. I could no longer join the army, I had to switch college courses and repeat my first year as I was no longer allowed to take A-Levels and I was still in pain. At 18 I aged out of the army cadet force, no longer spending three nights a week in exercise my activity levels dropped, and the pain increased. I spent six months in occupational therapy, learning how to manage my pain and increase my activity levels without causing additional pain. Being eighteen I moved out, I was now able to control my sickness leave with college and managed to work from home whenever I needed without it impacting my education. I got a job in a nightclub, and eventually had to leave as I was taking sick leave every three weeks from flare ups. A year later I got referred to physical therapy but was never sent an appointment letter and was discharged just after I started university. A month later I began this series, and allowed myself to be disabled. For the first time I accepted that this is my path in life, and I presented it to my university, allowing them to see the pain I was feeling inside. Making the invisible, visible.
I still struggle with pain, I always will, but I can manage it now. I know my limits and I know how to pace myself and I know when to ask for help. Two years after conducting this shoot I began using a mobility aid and walked at my graduation with that support. After I did the chancellor changed his speech, now asking all that were able to stand, rather than asking everyone. It was a small change in language, but it was a small change that I achieved from advocating for my own disability instead of struggling with pain in silence. Accepting disability wasn’t an easy thing, but it allows me to work and function at a level that I didn’t think I’d be able to see again six years ago.
