By Lisa Alioto in Realistic Optimism.
I have an invisible illness, meaning you cannot see it, but it’s oh, so present for me every minute of my life. I’m constantly exhausted, in pain, have a variety of cognitive deficits, vision loss, light, sound, and temperature sensitivities, a weakened immune system, and many, many more symptoms. Too many to name. Ironically though, I “look” perfectly healthy despite having a debilitating illness. What I have though is myalgic encephalomyelitis (commonly referred to as ME/CFS or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), one of the many invisible illnesses.
Unfortunately, the invisibleness of my illness and many others can cause people to quite often question the validity of our illness or symptoms. Whether it’s family, friends or employers, having an invisible illness comes with a whole set of problems beyond the illness itself. As if the illness wasn’t enough to handle! This invisibleness often adds a whole new layer of hurt, pain, and problems for those of us with such conditions.
And thanks to Scott Simpson, I was able to do that. Earlier this year I had the pleasure of coming into contact with Scott Simpson, who has both HIV and ME. Scott is on the core team of Millions Mission Canada, advocating for ME research funding and treatment access in Canada. Scott once was a medal winning triathlete and 3-time member of the national triathlon team in his age group. Now on a good day, Scott can walk for 10 minutes on flat ground. As Scott has stated, “I can accept the ME diagnosis, and I can accept the bleak prognosis, but I cannot accept the harm our health care system perpetuates on Canadians suffering with ME. I have experienced both ends of our health care spectrum, from the very best research and treatment in HIV, to non-existent research funding and either no or harmful treatments with ME.”
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