Working with Fibromyalgia

Everyone has personal struggles and barriers they face, whether in employment, education-access, physical ability, et al. I happen to be lucky enough to both attend the University of St Andrews fulltime pursuing and undergraduate degree and be employed parttime at Zest. I’m so grateful to have meaningful employment as well as a bright future, hopefully in academia. But some days these privileges feel tepid or not worthwhile given my disability.

I was diagnosed with Fibromyalgia and Ehlers-Danlos Syndrome Hypermobility Type in January 2020. These diagnoses came following years of constant physical pain since the age of seven (I didn’t even know that not everyone was always aching until I was 14). These disabilities both have long symptom lists, are relatively invisible unless you require a mobility aid, and are largely untreatable. I personally am most impacted by the symptoms of ongoing fatigue and widespread pain, with any serious flare-ups often leaving me bed bound for a week at a time.

On weeks like these I spend a lot of time thinking. I think a lot about the futility of my employment and education when I’m unable to practice and make the most of it. I think about how disappointed my employer or teachers must be in me. I think about the potential of losing my job or other opportunities because I’m out of commission for the week. Usually this thinking ends up with me attending classes and work despite the pain and making it worse for longer.

Just a month ago I messaged my coworkers at Zest for the first time looking for cover due to a flare-up. I was nervous how they’d respond and if they’d treat me differently, like an invalid or like I wasn’t pulling my weight at the café. But they weren’t angry or disappointed or dismissive like past employers and coworkers had been. I was taken seriously and at my work. I had the week off from work but was allowed to return as soon as I said I was ready. The amount of relief I felt was almost overwhelming. A life-work balance is so much harder to maintain when you add in university, let alone a disability on top. The flexibility of hours and scheduling that Zest gives makes it that much more accessible to someone like me who is juggling life, work, education, and a disability all at once.

~ Greysen B.