Ellie Fry writes movingly about her experience of being brought up by a mother affected by ME/CFS. The article covers how ME/CFS has been misunderstood by the medical profession and received little research funding compared with other conditions that affect smaller numbers of people.
ME is watching my mum struggle to walk up the stairs most days, or to shuffle to the kitchen to take her painkillers. It’s hearing her mentally strain to engage in conversation; struggling to articulate words.
It’s the days in bed, not because she’s tired – but fatigued, in a painful slumber where any light hurts her eyes. It’s making sure she’s eaten and drunk fluids, gently nudging her awake every so often from the pain-induced coma.
It’s helping with school runs, looking after my younger siblings, and being on call when I’m needed. It’s feeling selfish for being healthy and frustrated at how someone else’s illness can limit my independence.