As part of our May Momentum campaign, we’re sharing stories of people whose lives have been profoundly disrupted by ME/CFS. Today, we share Lauren’s story.
Before becoming ill, Lauren lived a full and active life. She worked full-time in retail, ran her own business from home, and studied animal care. Fitness and adventure were part of her everyday routine—she went to the gym five times a week, spent weekends outdoors, and traveled widely. She had explored Europe, snorkeled, camped, and even hiked the Grand Canyon during a trip to the U.S. Her life was busy, social, and fulfilling.
But ME/CFS and Long COVID changed everything.
“Since becoming ill, my world has grown so much smaller. I fluctuate between housebound or bedridden, and there’s no capacity for a social life; every day revolves around just meeting my basic care needs. During crashes, I can spend weeks, even months, in the dark, too unwell to speak or move much at all.
Basic tasks—getting dressed, preparing a meal, or even showering—require so much careful planning, and still deplete what energy reserves I may have on any given day. I can no longer work, drive, or go outside the way I used to. It’s truly turned everything I knew upside down, and despite trying to adapt, I don’t think I’ll ever get used to it.
To add to that, the isolation I experience is profound. I’ve lost touch with most of my friends, as many drifted away when they couldn’t understand what I was going through. Romantic relationships feel way out of reach, let alone the thought of having my own family someday. Even engaging in simple conversations is exhausting. My broader family has struggled to accept the reality of my disease, and because of this, they don’t support me, which has brought its own kind of grief.
I now live with my elderly father, as living independently is no longer possible. I’ve seen so many doctors, but few have even heard of or understand ME/CFS and Long COVID, so I’m often left feeling dismissed or invisible, like many others living this half-life. The contrast between the life I once had and the one I live now is vast—and some days, it’s hard to hold that grief or to believe I’ll get access to the right care, which will enable me to have some autonomy again.“
Lauren’s experience reflects a growing crisis. Millions are living with ME/CFS and Long COVID—still waiting for answers, effective treatments, and the chance to reclaim their lives.
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