Celine Dion breaks down revealing she had lived with illness for 17 years before announcing diagnosis

10 June 2024, 15:20

Celine Dion has revealed the intense emotional struggle she faced while secretly battling Stiff Person Syndrome for 17 years.

The singer, 56, admitted that "lying" to her fans became an unbearable burden. Although her diagnosis of this rare autoimmune neurological disorder was made public in 2022, she recently shared that she had been grappling with the condition in silence for nearly two decades.

In a preview for an upcoming sit-down interview with Today Show host Hoda Kotb, Celine detailed the pain of hiding her condition from her supporters. She described keeping the secret from "the people who got her to where she was" as a huge "burden" explaining that it felt like she had to act like a "hero" while secretly feeling her "body was leaving her".

• Celine Dion documentary trailer shows her fight to return to the stage: "If I can’t walk, I’ll crawl"
• Celine Dion's last performance: Star sings 'My Heart Will Go On' before Stiff Person Syndrome diagnosis
• Celine Dion addresses Stiff Person Syndrome, calls it "one of the hardest experiences" of her life

In the teaser, set to air in full on Tuesday at 10pm ET on NBC, Celine recounted how she initially didn’t "take the time" to figure out what was wrong as she struggled alongside her husband, René Angélil, who was battling throat cancer until his passing in 2016.

"We did not know what was going on [with me]," she said. "I did not take the time… I should have stopped, took the time to figure it out. And like it wasn’t enough, my husband as well is fighting for his own life."

After René’s death, Celine found it difficult to balance raising her children, René-Charles, 23, and twins Nelson and Eddy, 13, with her career, all while keeping her deteriorating health a secret from the public.

"I had to raise my kids, I had to hide, I had to try to be a hero - while feeling my body leaving me," she continued. "[I was] holding on to my own dreams." Eventually, the "lying" became "too much", and she decided she could no longer keep the truth from her fans.

Hoda Kotb, reflecting on the interview on the Today show, revealed that Celine had battled the disease for 17 years, during which she experienced severe symptoms like losing her voice, her body failing her, and frequent tripping and falling. Despite the severity of her condition, Celine is "on the road" to recovery.

Celine Dion cries over stiff-person syndrome in trailer for documentary

Stiff Person Syndrome is a degenerative condition that causes muscles to tense and spasm uncontrollably, progressively locking the body and leaving sufferers unable to walk or talk.

While there is no cure, treatments can slow the symptoms, and Celine is exploring these options. She continued to perform until 2022, when she announced her diagnosis and cancelled all upcoming shows.

• Celine Dion's 10 best ever songs, ranked
• The Story of... 'My Heart Will Go On' by Celine Dion from Titanic
• When Celine Dion crashed wedding couple's first dance singing 'Because You Loved Me'

In her NBC interview, Celine described the difficulty of singing with the condition, comparing it to feeling like "somebody is strangling you" and pushing on her larynx and pharynx, making it hard to control her pitch due to spasms. She is undergoing "athletic, physical and vocal therapy" five days a week to combat the symptoms.

Celine is also preparing to release a tell-all documentary, I Am: Celine Dion, which offers a heartbreaking glimpse into her health battle.

In a trailer for the Amazon Prime special, debuting on June 25, Celine is seen in tears as she discusses the disease and its effects, showing her determined efforts to save her voice and her will to sing again.