Music megastar Celine Dion has opened up about the impact of stiff person syndrome on her life with TODAY’s Hoda Kotb ahead of the release of her documentary, I Am: Celine Dion.
Revealing that singing with the neurological condition feels like “somebody’s strangling you,” Dion explained, “It’s like someone is pushing your larynx, pharynx,” and demonstrated the effect by pressing on her throat. “It’s like you’re talking like that, and you cannot go higher or lower.”
Dion added that stiff person syndrome can also affect her ribs, abdomen and spine, describing in harrowing detail, “Sometimes, when it’s very severe, it can break some ribs. It feels like if I point my feet, they will stay [in that position].
“Or if I cook [Dion says she loves to cook], my fingers, my hands will get in position. It’s cramping, but it’s like in a position of like, you cannot unlock them.”
That’s only a snippet of Dion’s conversation with Kotb, with the full interview set to air on Tuesday, 11 June, on NBC. You can watch a segment of the interview below.
I Am: Celine Dion is arriving on Amazon Prime on Tuesday, 25 June.
In a statement, Dion said about the documentary, “This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me.
“As the road to resuming my performing career continues, I have realised how much I have missed being able to see my fans. During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.”
Dion first spoke of her diagnosis in December 2022, saying in a video shared on social media that she’d suffered debilitating muscle spasms due to stiff person syndrome (John Hopkins Medicine describes the condition as a “rare autoimmune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time”).
As a result of her diagnosis, Dion was forced to wipe an entire slate of touring.
