There is a reality that is not given the importance it needs, and we are talking about rare diseases, those that affect only a tiny percentage of the population. This time it was the actor Steven W. Bailey who spoke out. You probably know Steven for his role as a bartender on Grey’s Anatomy, and he has publicly shared that he lives with a rare genetic neuromuscular disease that has been shaping his life for more than five years, both on and off set.
Joe is 54 years old, and it is only now that he has confessed that he has spent several years dealing with congenital myasthenic syndrome (CMS), and that he spent years hiding it.
What is Congenital Myasthenic Syndrome (CMS)?
CMS is one of the so called “rare” diseases that causes extreme fatigue, muscle weakness, and loss of mobility. For years, Steve suffered this in silence out of fear that doors in the industry would close for him.
“Any muscle used for movement can be affected, including the muscles that control speech, chewing and swallowing, vision and blinking, breathing, and mobility,” the medical center added.
A truth that had been waiting to come out for years
This disease appears to be hereditary, and as explained above, it affects absolutely all movements of the human body. The brain continues to function and send orders, but the body does not always respond. And for any human being, walking long distances or enduring long workdays becomes a real challenge.
For actors, the same movements are repeated over and over again, but he wanted to keep working as long as he could, adapting as best he could so as not to raise suspicion.
This disease can appear at any point in life, although it is more commonly diagnosed in childhood.
Bailey admitted that he spent years hiding his struggle with the disease, but that it is time to make visible what it is like to live with this condition and to show how it manifests. Constant fatigue, loss of strength, good days and very bad days.
“Repetitive and sustained movements are particularly difficult and can cause my muscles to tighten and temporarily stop working.”
The fear of speaking up
Perhaps the hardest part of all was not the disease itself, but the silence he had to keep for years. The actor acknowledges that he hid his diagnosis for years out of fear of not having a place in Hollywood, because we already know that any fragility shown in the industry closes doors, so he decided not to talk about it.
A career that does not end, it just changes
Today, Steven W. Bailey uses an electric wheelchair, although he is still able to walk his dog and stand up. Obviously, his way of working has changed, but his career is not over. Instead, he is choosing to play characters who also live with disabilities, seeking a more honest and less stereotyped representation on screen.
“From now on, it is time for my work, just like my life, to start being more practical.”
The importance of representation
For decades, the screen has been a display of “perfection”, there were hardly any different bodies or people with any kind of disability, and those that appeared fell into cheap clichés, or were directly played by actors without any disability at all.
“Now I am here, not hiding, with a clear understanding of my disease, with wheels in tow, ready for the next chapter of my life and my career.”
Bailey wants to tell stories from the inside. That way, he can normalize and above all humanize this type of disease so that millions of people can see themselves reflected.
A wave of support
After his revelation, social media filled with messages of affection. Fans, castmates, and industry professionals applauded his bravery, and organizations dedicated to rare diseases also took the moment to remind people that visibility promotes research, and research is the future.
This story speaks for all those people who live with invisible illnesses, who make twice the effort and explain half as much. For those who feel they have to choose between their health and their work.
You may know me from Grey’s Anatomy as Joe the bartender — or from appearances on Modern Family, You, Chicago Fire, or some other appearance.
I would like to share something important with you about my life and my career.
🧵👇
— Steven W. Bailey (@theStevenBailey) January 3, 2026