In an upcoming primetime interview with the Today Show‘s Hoda Kotb, Celine Dion describes the agonizing pain she’s suffered while battling the rare neurological condition Stiff Person Syndrome. “It’s like somebody is strangling you,” Dion said in an excerpt of chat that aired on The Today Show on Friday morning (June 7), the first broadcast interview the singer has done since revealing her diagnosis in 2022. “It’s like somebody is pushing your larynx/pharynx this way [raises voice]. “It was like talking like that, and you cannot go high or lower. It gets into a spasm.”
In fact, Dion, 56, said, the spasms caused by the disorder can get so intense that they have caused painful physical injuries. “I have broken ribs at one point because sometimes when it’s very severe it can break some ribs as well,” she said.
The rare disorder can cause uncontrolled muscle spasms that make it hard to move and it forced Dion to cancel her planned 2023 tour after her sister revealed that the singer had “no control” over her muscles. Her long road managing the disease is the subject of the upcoming documentary I Am: Celine Dion, which will debut on Prime Video on June 25.
In addition to affecting her voice, Dion said the muscle spasms and stiffness associated with Stiff Person Syndrome can migrate to other parts of her body, including her spine, feet and abdomen. “It feels like if I point my feet, they will stay in a (stuck position), or if I cook — because I love to cook — my fingers, my hands, will get in a position. It’s cramping but it’s in a position like you cannot unlock them.”
Dion told Kotb that she first began having difficulty controlling her voice after noticing symptoms in 2008, saying that initially she thought things would be “fine.” But when the muscle spasms and stiffness in her hands and feet became more prominent she realized something serious was happening with the disease that is chronic and progressive, but which can be managed with medication. “She’s on the fight of her life right now,” Kotb said in Friday morning’s preview.
In an interview with Vogue France in April, Dion said she has therapy five days a week to strengthen her voice and work on moving her joints, but she still doesn’t know if, or when, she’ll return to the stage. “I can’t answer that… Because for four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready,” she told the magazine. “As things stand, I can’t stand here and say to you: ‘Yes, in four months.’”
The full interview will air as a primetime one-hour special on NBC on Tuesday (June 11) at 10 p.m. ET. Watch the preview of Kotb’s Dion sit-down below.
