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Profound exhaustion that is not relieved by rest and lasts for six months or longer. Brain fog. Pain. These and other symptoms are hallmarks of myalgic encephalitis/chronic fatigue syndrome (ME/CFS). Sufferers find that their symptoms often increase after minor daily tasks, work, and other exertions.
A new report from the CDC estimates that 3.3 million Americans—including many with Long COVID—may have this difficult-to-diagnose illness. Below is one such story from the Health Story Collaborative series on chronic illness, “Making the Invisible Visible,” that we’re excited to share with our readers.
Millions of Americans live with chronic illness. But how authentically do we tell—or share—these stories? Chronic illness doesn’t necessarily strengthen us or lead to transformation, as popular culture narratives often emphasize. It can fuel a sense of being alone in a world of well-being. And long-term illness may go undiagnosed for years or progress from one clear point to the next.
As Dr. Annie Brewster, founder and executive director of Health Story Collaborative (HSC), notes, “We can’t control what happens to us, but we can control the meaning we make from it.” Jonathan Adler, PhD, is HSC’s academic director and a psychologist focused on the healing power of narrative. Together, the two have helped people dig deep to shape deeply personal stories and share truths about illness through audio, video, and art.
Below, we share a few moments from the experience of Lili, a basketball-loving, ambitious college student who seemingly effortlessly juggled theater roles, sports, and a heavy course load until she was overcome by crippling exhaustion. (Edited and condensed from video.)
“I could barely be woken up by my alarm clock and drag my body to classes and rehearsals,” Lili recalls. A treatable case of hypothyroidism—which does cause fatigue—was just the first round. Stimulants prescribed by a therapist helped, but when she stopped taking them after graduating high school, the fatigue returned to the core, leaving her bedridden and undiagnosed for endless months.
“My bones weighed 10 pounds. Thoughts darted in and out, but they never stuck,” Lili says. Eventually, an infectious disease specialist helped her identify the health issues that were so radically affecting her life. “With debilitating fatigue, severe brain fog, and post-exertional malaise—breakdowns caused by activities like talking, showering, eating, walking, texting—he told me I was diagnosed with ME/CFS: myalgic encephalitis, better known as chronic fatigue syndrome.”
The losses from chronic illness are numerous. “When my body was taken from me, I lost a huge part of my identity. In many ways, being athletic and strong is a huge part of who I am—or who I was,” Lili says. “My mind doesn’t work the way it used to. For example, I got an important software update, but it didn’t download properly. Now I’m just stuck on the blue screen with the cursor blinking.”
Lili’s path (or paths) forward isn’t yet clear. When you’re battling a chronic illness on a daily basis, recovery isn’t the golden arc shown in movies or popularized in print. “Maybe one day it will all come together into a clear picture, but I think it will continue—in a messy, patchy way, one day at a time,” she says. “My story has no resolution. It’s still being written.”