Lauren Pires spent most of her life feeling like she didn’t belong. For two decades, she walked, climbed stairs, and pushed through exhaustion in silence, convinced no one would grasp what it meant to move through the world at half-speed. The disability icons she knew—Rick Hansen, the wheelchair athlete, or Terry Fox, the marathon runner—didn’t reflect her reality. Neither did the media. Even after her diagnosis at 26, she hesitated to speak about it. Without that framework, she struggled to articulate her struggles, let alone find others who shared them.
Life with central core disease isn’t just about physical weakness. It’s about the quiet, daily recalibrations: pacing steps to avoid collapse, skipping social events because recovery takes days, choosing universities based on building layouts rather than prestige. Pires remembers visiting University of Guelph-Humber and realizing its compact campus would spare her the exhaustion of sprawling commutes. By then, she’d already normalized it—adapting without realizing she was accommodating a disability.
Invisible disabilities carry their own stigma. Online, strangers dismissed her condition as “laziness.” Friends, unaware of the effort behind seemingly simple tasks, spread rumors about her extensions as “special treatment.” Even well-meaning comparisons, “You don’t look sick”, undermined the reality of chronic fatigue. Yet the frustration lingers: how to explain a body that fails without sounding like it’s failing you.
Finding Community After Years of Silence
What started as isolation became a deliberate choice to find community. In her early 30s, Pires joined Speaker Slam, a group where people shared their journeys. For months, she watched others speak, surprised to see disability represented at all. The shift wasn’t instant. First came fear, would people judge her? Then came the realization that silence wasn’t the only option. Through speaking, she met others with central core disease, a connection she’d assumed was impossible.
The mental load of managing an invisible disability is often unseen. Pires plans her days like a puzzle, balancing energy against obligations. A single strenuous weekend, like working a music festival, could derail her for days. She’s missed milestones, like her best friend’s son’s first birthday, because the cost of attendance was too high. “Sometimes it’s fine,” she says. “But sometimes it sucks.” The trade-offs are constant: skydiving, solo travel, even simple outings become calculations of risk versus reward. Would she enjoy them if her body weren’t a limiting factor? She doesn’t know.
Yet Pires has built a life that works for her. She frames it around what she calls her “daily yay”, small victories to counterbalance the hard days. A festival job that drained her but left her standing onstage, watching thousands cheer. Friends who mapped out adventures so she could join. A gratitude journal where she logs moments of joy, no matter how ordinary. “It helps you get through the bad ones,” she says.
The Cellular Challenge of Central Core Disease
Central core disease doesn’t just reduce muscle strength; it rewires how the body functions at a cellular level. Pires’ condition stems from missing mitochondria in muscle cells, the energy factories that power movement. Without them, her muscles lack the endurance to sustain activities others take for granted. Even simple tasks like rising from a low chair or climbing stairs require deliberate effort, as her body struggles to recruit enough functional fibers to complete the motion. The difference between her strength and that of an average person is stark: where others might walk for hours without fatigue, she must pace herself to avoid collapse.
This physical limitation extends to daily mechanics. Pires describes adapting to her body’s constraints as a process of constant recalibration. For example, she avoids prolonged standing or sitting in one position, as both can trigger muscle fatigue. She also plans household chores with precision, vacuuming one day might mean skipping laundry until she has energy to spare. The mental effort of managing these adjustments is often underestimated.
Pires’ university selection was influenced as much by physical accessibility as by academic reputation. In contrast, larger universities like York or Toronto Metropolitan would demand quick movement between classes, something her body couldn’t sustain. The realization came as a surprise because her disability had become so normalized that she no longer questioned her own adaptations. She had simply chosen the path that required the least physical strain.
Life’s Trade-Offs: Energy vs. Experience
Even now, she plans her life around her body’s limits. Working a music festival drained her so severely that recovery took days, leaving her unable to attend. Such absences aren’t just about physical exhaustion; they’re about the emotional weight of prioritizing survival over celebration. Pires acknowledges that some experiences, like skydiving or solo travel, may forever be out of reach, not because she lacks interest, but because the energy cost outweighs the reward. she asks.
The stigma fades when others understand the spectrum of disability. Accessibility isn’t just for others. It’s for everyone’s future.
