Humans of ME/CFS
The first week of graduate school was only a few weeks away when I suddenly became very sick and mysteriously didn’t get better. I was poised to take on a fulfilling career in health sciences research and was planning to make a name for myself in clinical medicine, filling my leisure hours with running, cycling, hiking and other outdoor adventures. But it quickly became apparent that school was not going to be feasible, and neither was my laboratory job that I was just getting into the groove of. I essentially had to drop out of life and try to figure out what had taken over my body so violently.
That was just over six years ago, and I’ve managed to adjust my expectations dramatically since then in order to lead as satisfying and meaningful a life as possible. I’ve endured a great many changes over the years, including: returning to part-time work, taking a few college classes, getting married, opening my own businesses, losing my job again, suffering a major relapse, getting divorced and moving to a new area. Each day brings a new set of feelings, both physical and emotional, and I credit my yoga and meditation practice for keeping me afloat in this often-turbulent sea.
I’ve learned a lot about radical self-care and have had to learn the hard way how to prioritize my needs so I don’t get sicker, even at the expense of career opportunities, friendships, social invitations and vacation plans. It’s frustrating being so young (I’m only 29) and also living with an invisible illness. When I walk down the street, nobody suspects that I have a debilitating disease that prevents me from doing half the things I want to do. Every time I get to know someone new, I feel like I have to “come out” over and over again, which only compounds the feelings of isolation that I deal with.
Luckily, I’ve had the privilege of good health insurance and have met and worked with a group of great doctors over the years. But no matter how amazing they are, ME/CFS still remains a mystery; a mystery that robs me of sleep, of energy, of cognitive function and a “normal” young woman’s existence. I’m managing fairly well right now thanks to a combination of prescription medication, dietary intervention and alternative healing approaches. Building on my background in human health sciences, I hope to soon get certified as a holistic health professional, and work with other young women affected by chronic and invisible illnesses. As well as be a voice for change, for education, and for research funding!
You can follow my story at www.abrighterwild.com