My Invisible Illness Just Became Visible and Here’s Why

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.

Thanks to Scott Simpson, I have been able make my invisible illness visible. 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.”

As a result, Scott does amazing work seeking out interviews with survivors, victim’s families, policy makers, and health care workers around the world. He asks the tough questions, including what went wrong and how can we make health care safer. Scott uses his counselling skills to evoke the secrets, stories, and solutions to bring medical errors and mysteries to light.

Recently, Scott helped me put a face and voice to my illness. At first, I was hesitant because there are so many with my illness that have more severe forms of it that I thought I would be doing the ME community an injustice. With Scott’s assurances, and his professionalism and expertise, he put together an interview that highlighted how debilitating even my mild condition of ME can be. If what I have is considered a “mild” form of ME, imagine what life with a moderate or severe form of ME is like?? From talking to those with more severe forms of ME, I can tell you that it’s unimaginably challenging, painful, and exhausting on a whole new level.

During the full interview I share my journey of medical missteps before getting a proper diagnosis, and then more medical errors from contraindicated treatment. A story sadly similar to those with MECFS. A short trailer to the interview can be found at: (https://www.youtube.com/watch?v=wxZ84733KzI).

As you will learn in watching the full 45-minute interview, I went from being a busy attorney that once summitted Mount Kilimanjaro, the world’s largest free-standing mountain, and a lover of hard-core workouts, to one that craves my couch constantly. I encourage you to check out the full 45-minute interview. It’s a quick watch, puts a voice to ME, and the medical errors that occur again and again when it comes to diagnosing and supporting this condition. In many, many cases, including mine, harmful, ineffective medications are given and protocols are promoted that exacerbate the illness rather than help it. Please take a moment to literally hear about how life-changing and debilitating even a mild form of ME can be: https://medicalerrorinterviews.podbean.com/e/lisa-alioto-misdiagnosis-myths-medical-errors/.

As you watch this episode, you can walk away today knowing you have helped increase awareness not only of this illness (if you don’t have it) but also learned of the strong need for more funding, research, and advocacy for this condition.

I would be remiss without noting that there are many great organizations advocating for a cure for us, promoting awareness, research, and the obtainment of funds, including the Open Medicine Foundation, Solve ME/CFS Initiative and #MEAction. There are also many state organizations, including one I co-founded in my home state of Minnesota, the Minnesota ME/CFS Alliance. These organizations are doing amazing things daily to support ME patients, but we need more help now as millions across the globe continue to suffer daily from this condition. We need more legislators to support funding for research, we need medical providers to learn about ME and more doctors to specialize in it, and we need greater employer and public awareness.

Let this be the first or continuing step in your journey to this if you are new to ME. And for my friends with ME, I hope that Scott’s and my efforts have helped contribute to our common goals!

I see so many amazing and creative efforts going on in the ME Community to similarly bring a face, voice, attention to ME. Let's keep trending; we've got it!

From me (and ME) to you,

Lisa