The Chronic Crusaders recently traveled to Dexter, Michigan—a beautiful town just outside Ann Arbor—to sit down with Carol, a former special education teacher, who shared her powerful journey living with scleroderma.
From Diagnosis to Resilience
Carol first noticed symptoms in her hands and feet nearly nine years ago. Within six months, she was diagnosed with scleroderma at the University of Michigan. The disease progressed quickly, forcing her to leave her teaching career and go on disability. She describes the experience as suddenly being dropped into a “foreign country” without a passport or language—confusing, isolating, and overwhelming.
But Carol soon found “fellow travelers”: doctors, occupational therapists, alternative healers, family, friends, and her church community. Together, they helped her turn a corner and begin navigating life with scleroderma.
Teaching Herself to Cope
As a teacher, Carol spent years motivating students to push through challenges. She realized she needed to use those same skills on herself. She developed an inner “teacher voice” that guided her through frustration, encouraging her to problem‑solve and keep moving forward.
Support and Independence
Carol emphasizes the importance of teaching loved ones how to help. She values independence but also knows when to ask for support—whether it’s using spring‑loaded pliers to retrieve an ATM card, a tacky grip mat called Dycem to open jars, or keeping detailed notes to coordinate care across multiple doctors.
Living with Healthy Tension
Carol describes a “healthy tension” between accepting limitations and challenging them. While she can no longer play volleyball, she’s found creative ways to kayak using Velcro straps, and recently completed a 170‑mile walk across Spain with her sister. These experiences remind her that while some doors close, others open with persistence and creativity.
Love, Faith, and Attitude
Carol’s resilience and problem‑solving spirit even led her to meet her husband, who admired her determination to adapt. She draws strength from scripture and a guiding belief: “You don’t get to pick your disease, but you do get to pick your attitude.”
Carol’s Message
Her story is a reminder that while scleroderma brings challenges, it also brings opportunities to grow, connect, and inspire. Carol’s journey shows us that resilience is not about denying difficulty—it’s about choosing life, leaning into challenges, and finding joy along the way.
Watch Carol’s full story in our video here:
From Isolation to Empowerment: My Journey with Scleroderma
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