This week, Yolanda Hadid—once a fixture in the fashion world, now a Lyme advocate and mother to internationally acclaimed model Bella Hadid—shared a deeply personal message on Instagram that struck a chord with countless families in the Lyme community.

For those of us who’ve watched our children suffer profoundly from tick-borne illness, her words are achingly familiar.

“Watching my Bella struggle in silence has cut the deepest core of hopelessness inside me,” she wrote.

“The invisible disability of chronic neurological Lyme disease is hard to explain or understand for anyone. I try to lead by example on our Lyme journey, but my own pain cannot compare to watching my baby suffer.”

From Yolanda Hadid’s Instagram.

Bella Hadid was diagnosed with chronic neurological Lyme disease in 2013, a year after her mom. Since then, Bella’s health has fluctuated dramatically—even as she continues to navigate the demands of a high-profile career in international fashion. To outsiders, that juxtaposition may seem incongruous. But Yolanda’s post reminds us that suffering often hides behind polished surfaces and public success.

“There simply aren’t words big enough for the darkness, the pain, and the unknown hell you’ve lived through since your diagnosis,” Yolanda wrote. “You didn’t really live, you learned how to exist inside the jail of your own paralyzed brain.”

“The CEO of my health”

Yolanda’s message is more than a mother’s lament—it’s a call to recognize the invisible toll of chronic illness. “I am the CEO of my health,” she writes, “and after fifteen years of searching the globe, I am still determined to find a cure affordable for all.”

That phrase—CEO of my health—is one many Lyme families will recognize. It’s the role we assume when conventional medicine fails us, when insurance won’t cover treatments, and when we’re forced to choose between financial stability and the hope of healing.

Yolanda’s post also speaks to the emotional weight this disease places on families. “This disease has brought us to our knees,” she says, “but we always get back up.” That resilience is the heartbeat of the Lyme community. It’s what sustains us through disappointing lab results, unyielding symptoms, and the quiet erosion of hope.

Bella Hadid’s struggle is not unique. But her visibility gives voice to millions who suffer way outside of the spotlight. And Yolanda’s decision to speak publicly—again, after years of quiet withdrawal—offers a renewed sense of solidarity.

To Yolanda and Bella: thank you for reminding the world that chronic Lyme is real, relentless, and deserving of compassion. May we all continue to fight for better days—and for a cure that’s accessible to all.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.