Eleanor's ME/CFS statement

As part of writing the section of my Digital Media Scrapbook about ME/CFS I asked my friend Eleanor Robinson if she wanted to be quoted. This is her entire response to my prompt: What would you like Educational Support students to know about ME/CFS?

When I first became ill, I was a top honours student, about to graduate high school and attend my dream undergraduate programme with a two scholarships. To say that I was eager to move forward into this future would be a massive understatement. Instead, what was at first just a virus, turned my body into an immovable burden. I was so weak that I couldn’t put my backpack on, yet I still took taxis to high school and completed the last 3 months of high school on a heavily modified schedule, usually sleeping 16 hours a day, completing projects and exams while burning with a 101 degree fever. Still I persisted. Finally, after months of extreme pain and fatigue, my burden eased just in time for me to leave home for university. But it came back. Again, and again. At my very worst, I was bedbound for 27 months; unable to lift a glass by myself. My current baseline allows some hours of mental exertion, reading and socializing with my family, but I cannot walk down the stairs and must have reduced sensory input eg. low light and quiet. This disability has robbed both myself and society of a world where I could reach my full potential. After six years of fighting my body, I had to give up all hopes of a career and a higher education. I’ve now reached a fragile detente with the disease. I forgo most things people take for granted in order to maintain a level of basic functionality where I can take care of my own hygiene, and have limited and controlled moments of happiness with my family and friends. The stigma I face with this illness/disability cannot be overstated. Most doctors haven’t even heard of it. It only became a recognized physical neuro-immune disease four years after I first developed symptoms. I am part of a community of disabled persons more likely to be starved to death and removed from the support and safety of caretakers by the state because there is a belief that either ourselves or our family members are hypochondriacs or that our caretakers are somehow abusing us when respecting our profoundly complex and difficult needs. There are incredibly few treatments, and no known cures. If there is anything that people creating policy changes for education should know, it is that this is a real, physical disease, that recognizing the work done should be a standard policy, rather than having to restart each course/grade, over and over again. That there should be no financial or academic punishment for attempting to become educated as a person with disabilities.