Steven W. Bailey, best known for playing Joe the bartender on Grey’s Anatomy, has shared how a rare genetic disorder changed his life, career and sense of identity. In a deeply personal public statement, the veteran actor revealed he has been living with congenital myasthenic syndrome, a neuromuscular condition that disrupts communication between nerves and muscles and leads to increasing weakness.
Bailey, 54, said the symptoms began quietly before his health collapsed in ways he could not explain. What followed was years of uncertainty, physical decline and emotional reckoning before he finally received a diagnosis in 2020.
Congenital myasthenic syndrome, often called CMS, is a rare inherited disorder that causes muscles to weaken when used. It can affect breathing, speaking, swallowing, vision, facial expression and movement. Because it is genetic and uncommon, many patients spend years searching for answers.
Bailey described one frightening moment when he tried to turn a screwdriver and suddenly could not move his hand. That loss of control was the first sign that something serious was wrong. From there, simple daily activities became harder, and fatigue set in quickly.
“There were private moments where everything kind of fell apart,” he said, explaining how he struggled to make sense of his body failing him.
Congenital myasthenic syndrome, or CMS, is a rare genetic condition that weakens the connection between nerves and muscles. This makes it harder for muscles to respond when the brain sends a signal to move.
The condition causes muscle weakness that becomes worse with physical activity and improves with rest. People may feel strong at first but quickly lose strength as they continue to move.
CMS usually begins at birth or in early childhood, although milder forms can appear later in life. It is a lifelong condition.
The disease can affect many muscles in the body, including those that control the eyes, face, arms, legs, breathing and swallowing.
People with CMS may struggle with drooping eyelids, blurred or double vision, and difficulty moving their eyes.
Weak facial muscles can lead to slurred speech and problems with chewing or swallowing food.
Some individuals may experience breathing difficulties, especially during illness, stress or physical exhaustion.
Babies with CMS may have trouble feeding, sucking or swallowing.
Delayed milestones such as sitting, crawling or walking often appear because muscles tire easily.
Children may seem floppy or unusually weak compared to others their age.
CMS happens because of changes in specific genes that control how nerves send messages to muscles.
These genetic changes disrupt the normal flow of signals at the junction between nerve and muscle, so the muscle does not receive a strong or steady command to contract.
Different gene changes lead to different forms of CMS, which explains why symptoms and severity vary from person to person.
Doctors look at symptoms, family history and physical exams to suspect CMS.
Genetic testing helps confirm the diagnosis and identify the exact type of CMS.
Some people receive a diagnosis in infancy while others may not learn the cause of their weakness until later in childhood or adulthood.
There is no cure for CMS, but doctors can prescribe medicines that help muscles work better in some types of the condition.
On January 2, Bailey shared an open letter on social media, announcing his condition publicly for the first time. He explained that fear, uncertainty and the realities of working in Hollywood kept him silent for years. But he decided it was time to be honest with the people he works with and the audience who has followed him for decades.
By going public, Bailey hopes to normalize conversations about disability and chronic illness, especially in an industry that often avoids these realities.
Bailey now uses a powered wheelchair for longer distances and describes himself as an ambulatory wheelchair user, meaning he can still walk short distances but relies on mobility support for safety and energy.
He admits that acting has become more physically demanding. Muscle fatigue, balance issues and endurance limits require careful planning on set. But he refuses to step away from the craft he loves.
“Professionally, this is changing me as an actor,” he said. Rather than seeing his diagnosis as the end of his career, Bailey believes it gives him a deeper emotional range and a more authentic connection to characters who live with adversity.
Before his diagnosis, Bailey built a long and respected career in television. In addition to Grey’s Anatomy, he appeared in NCIS, Buffy the Vampire Slayer, Angel, Scandal and Modern Family. His role as Joe made him a familiar and comforting presence to millions of viewers around the world.
Now, he hopes to continue working while also pushing for better representation of people with disabilities in film and television.
Bailey says his journey has given him a new mission. He wants Hollywood to tell more stories about people who use wheelchairs, live with chronic illness and adapt to physical change without being defined by it.
Reference:
Mayo Clinic Staff. “Congenital Myasthenic Syndromes: Symptoms and Causes.” Mayo Clinic. Last reviewed November 28, 2023. Accessed January 13, 2026. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/congenital-myasthenic-syndrome/symptoms-causes/syc-20354754
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