Celine Dion Describes Singing With Stiff-Person Syndrome: ‘It’s Like Somebody’s Strangling You’

Celine Dion opened up about her battle with Stiff-Person Syndrome in an interview with Hoda Kotb, set to release on Tuesday, June 11. “It’s like somebody’s strangling you. It’s like somebody’s pushing your larynx this way,” shared the 56-year-old.

The “My Heart Will Go On” singer added, “It can be in the abdominal. It can be in the spine, in the ribs. But it feels like if I point my feet, it will stay in it…Or if I cook, my fingers or my hands will get in position. It’s cramping, but it’s like you’re in the position of you cannot unlock them.” 

The health update comes after she revealed her diagnosis in December 2022. “I have been diagnosed with a very rare neurological disorder, and I wasn’t ready to say anything before, but I’m ready now,” Celine said in the teaser for her new documentary I Am: Celine Dion, set to release through Prime Video on June 25.

The autoimmune disease is “a rare disorder of motor function characterized by involuntary stiffness of axial muscles and superimposed painful muscle spasms, which are often induced by startle or emotional stimuli,” per the Mayo Clinic.

In January, when announcing her documentary via an Instagram post, she noted, “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 a result of battling through SPS, Celine had to cancel her Courage World Tour. “It’s not hard to do a show, you know? It’s hard to cancel a show…I’m working hard every day but I have to admit, it’s been a struggle. I miss it so much, the people, I miss them. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop,” admitted the “It’s All Coming Back to Me Now” hitmaker. 

“Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible,” she captioned an Instagram post made on International Stiff-Person Syndrome Awareness Day on March 15 .