For decades, Dr. Tracy Scott was the one with the answers. A respected clinical psychologist, radio host, and university lecturer, he spent his career counseling others through their mental and physical challenges. But in 2017, the tables turned. Dr. Scott found himself on the other side of the diagnosis. What followed was a harrowing personal journey with a rare, mysterious illness called Stiff Person Syndrome (SPS) — one that would reshape his understanding of illness, identity, and resilience.
Now, with the release of his new book, “Doctor to Patient: Living with Stiff Person Syndrome,” Dr. Scott is pulling back the curtain on his diagnosis and giving voice to a little-known disorder that affects approximately two out of every million people. While famed singer Celine Dion recently brought SPS into the spotlight, Dr. Scott’s account offers an intimate, therapeutic, and deeply human look at what it means to live with the condition every day.
“Most doctors have never heard of it, and most have never seen it,” Dr. Scott explained in an interview with the Crusader. “Even for me as a psychologist, this was uncharted territory.”
For over 15 years, Dr. Scott battled unexplained symptoms: muscle spasms that could erupt without warning, excruciating stiffness that at times rendered him immobile, and a constellation of physical issues that defied diagnosis.
The spasms, he said, “can be so severe that they contract or even break bones. It affects how your body moves, and when it hits, I only have a few minutes to intervene before it takes over my whole body.”
Initially misdiagnosed or dismissed, Dr. Scott endured a frustrating odyssey through the medical system. It wasn’t until one physician finally uttered the words “Stiff Person Syndrome” that things began to make sense. “When I went home and looked it up, I said, ‘Oh my God.’ After 15 years of searching, I finally had a name for what was happening.”
The diagnosis brought clarity but not a cure. SPS is an autoimmune neurological disorder with no known cure. Common treatments, like the muscle relaxant Baclofen and the sedative Valium, brought only partial relief. In time, Dr. Scott turned to cannabis after careful research and consultation with his doctor.
“In three months, I figured out what strain and strength worked for me,” he said. “Cannabis and Valium together helped me reclaim some quality of life, but they weren’t enough on their own.”
Dr. Scott’s survival strategy evolved beyond prescriptions. Drawing from his own professional training in neuropsychology, psychopharmacology, and spiritual counseling, he committed to an integrative, whole-life approach.
“I had to address my mind, body, and spirit,” he said. “Laughter, music, gardening, meditation, tai chi, and a plant-based lifestyle all became part of my daily medicine.”
That shift from academic theory to personal necessity is at the heart of his book. “Becoming a forever patient,” as he calls it, changed everything. “I was no longer speaking from a place of professional detachment. This was now my lived reality.”
“Doctor to Patient” isn’t simply a personal narrative. Each chapter includes a “Learning and Discussion” section designed to help readers apply the material to their own lives. Dr. Scott also includes a robust resources section to connect patients and caregivers with national advocacy groups, research foundations, and peer support networks.
“I wanted to offer not just a story, but tools,” he said. “Tools for empowerment, for confidence, for resilience.”
Among the resources listed in the book are the Stiff Person Syndrome Research Foundation, the National Organization for Rare Disorders, and the Rare Action Network. These organizations offer community, information, and advocacy—all crucial for patients navigating rare illnesses.
Despite the physical toll of SPS, Dr. Scott remains firmly rooted in a mission to help others. “The greatest lesson I’ve learned,” he said, “is to never allow my pain or spasms to be bigger than my purpose.”
That purpose, once channeled through lecture halls and radio broadcasts, now shines through the pages of his book and in his public appearances. Earlier this June, Dr. Scott toured Chicago for media interviews and hosted a public book signing and discussion on Tuesday, June 17 at the College of DuPage Health & Science Center in Glen Ellyn.
His journey also highlights the emotional toll chronic illness takes on families. He credits his wife Denise for her patience and steadfast support, but acknowledges that caregiving is one of the hardest roles anyone can endure. “My condition affects not only my life, but hers, our friends’, and family members’. It requires understanding, tolerance, and deep commitment on both sides.”
Dr. Scott’s story is powerful because it challenges the assumption that doctors are somehow immune to the vulnerabilities their patients face. In becoming a patient himself, he bridged the emotional gap that so often exists between clinical care and lived experience.
“As Howard Thurman once said, you can choose misery or you can choose hope. I chose hope,” he said. “I don’t tell people what they should do. I share what I did, and if that helps someone, then it’s all worth it.”
“Doctor to Patient: Living with Stiff Person Syndrome” is available now through Wordeee Publishing, Amazon, Google Play, and other major platforms. For more information, visit www.drtracyscott.com.