Céline Dion On Why She Finally Stopped “Lying” About Her Rare Medical Diagnosis

Céline Dion felt like she was being strangled. Both physically, due to her diagnosis of the rare degenerative neurological disorder known as Stiff Person Syndrome, and emotionally, from concealing it from her fans.

In a new interview with Today’s Hoda Kotb, airing Tuesday, Dion opened up about her condition and what led her to come forward publicly with her diagnosis in December 2022 after postponing tour dates.

Before she shared that she was fighting the condition, she said she felt like she was “lying to the people who got me where I am today.”

“I could not do it anymore,” she said.

She first felt what she now knows were early symptoms of the disease in 2008, she said, having trouble controlling her voice and feeling unusual stiffness in her body. Those with Stiff Person Syndrome experience uncontrollable muscle spasms, and Dion said that she’s broken ribs before, and had her hands and feet become totally immobile. “You cannot unlock them,” she said.

“It’s like somebody is strangling you,” Dion said of trying to sing with the condition. She gestured to herself in demonstration: “It’s like somebody is pushing your larynx/pharynx this way.”

Trying to hide the terrifying disease, while also caring for her cancer-stricken husband René Angélil, who passed away in 2016, and the couple’s three sons, left little time for her to process or understand what was happening to her.

“I should have stopped, taken the time to figure it out,” Dion said. “My husband, as well, was fighting for his own life.”

“I had to raise my kids,” she said. “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 … the burden was too much.”

In a recent interview with Vogue France, Dion said that she’d stopped questioning why she’d been stricken with the condition, and started focusing on the positive.

“People question life all the time,” she said. “Stop questioning life, we should be living it. It’s not always beautiful, but it’s here.”

Dion is the subject of a new Prime Video documentary, I Am: Celine Dion, which will premiere on the streamer June 25.