Celine Dion Explains Why She Finally Went Public With Stiff Person Syndrome Diagnosis: ‘I Could Not Do This Anymore’

Celine Dion Explains Why She Finally Went Public With Stiff Person Syndrome Diagnosis: ‘I Could Not Do This Anymore’

Celine Dion suspected something was wrong with her for a a long time. But it wasn’t until she publicly shared her diagnosis with the rare neurological condition Stiff Person Syndrome in 2022 that the singer finally felt like she’d come clean about her health struggles. In the latest preview of an upcoming NBC primetime special in which Dion discusses her health issues, the Canadian powerhouse vocalist tells The Today Show‘s Hoda Kotb that she knew it was time to be more transparent.

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“I could not do this anymore,” Dion says of the burden of not telling her fans and the public the secret she was carrying in the first broadcast interview since her diagnosis. “What do you want me to say? I have… what? We did not know what was going on,” the singer says. “I did not take the time. I should have stopped. Take the time to figure it out… my husband as well was fighting for his own life. I had to raise my kids. I had to hide. I had to try to be a hero. Feeling my body leaving me, holding onto my own dreams. And the lying for me was – the burden was like too much.”

More pointedly, Dion says, lying to the “people that got me where I am today” was unbearable.

In an earlier preview, Dion described the agonizing pain she’s endured from the rare condition, saying it feels like “somebody is strangling you… 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.”

Dion, 56, told Kotb that the spasms caused by the disorder have sometimes gotten to intense that at one point she broke some ribs. The condition can cause uncontrolled muscle spasms that make it hard to move and it forced Dion to cancel her 2023 tour after her sister revealed that the singer had “no control” over her muscles. Her challenging road to managing the disease is the subject of the upcoming documentary I Am: Celine Dion, which will debut on Prime Video on June 25.

The singer also tells Kotb that she first began having trouble controlling her voice after noticing symptoms in 2008, saying that initially she thought things would be “fine.” But then the muscle spasms and stiffness in her hands and feet became more prominent and she realized something serious was happening with the chronic, progressive disease that can be managed with medication.

The full interview will during a one-hour primetime special on NBC on Tuesday (June 11) at 10 p.m. ET.

Watch Dion on the Today Show below.


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