Celine Dion reveals she battled Stiff Person Syndrome for 17 years before going public

The Canadian superstar has revealed a secret she hid from fans for nearly 20 years in an emotional TV interview.

Celine Dion has admitted that she had been battling with stiff person syndrome in secret for 17 years before publicly revealing her diagnosis two years ago.

In her first broadcast interview since announcing she has a rare neurological condition in 2022, the Canadian superstar got emotional as she revealed how “lying” to her fans had taken a toll on her.

The 56-year-old described how keeping it from “the people who got her to where she was” as a huge “burden”, and that it felt like she had to act like a “hero’ while secretly feeling like her “body was leaving her.”

Celine Dion in her preview interview with Today.

“We did not know what was going on [with me],” Dion said in a preview from an upcoming interview with the US Today show.

“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.”

Her husband, René Angélil battled his own health problems before he passed away from throat cancer in 2016.

In an exclusive interview with TODAY, singer Celine Dion reveals why she decided to come forward with her diagnosis for stiff person syndrome. "I could not do this anymore," she says, adding, "Lying for me, the burden was too much." pic.twitter.com/LJvUrcFjpO

— TODAY (@TODAYshow) June 10, 2024

“I had to raise my kids, I had to hide, I had to try to be a hero – while feeling my body leaving me,” Dion said.

“[I was] holding on to my own dreams.”
However, it all eventually became “too much” and the singer said: “Lying for me was … The burden was too much. Lying to the people who got me to where I am today, I could not do it anymore.

“Not telling the truth was too much to carry,” host Hoda Kotb said, to which Dion replied: “I could not do this anymore.”

In another part of the NBC interview Dion detailed how difficult her life had become with the debilitating condition.

“It’s like somebody is strangling you,” Dion said. “It’s like somebody is pushing your larynx/pharynx this way.”

“It was like talking like that, and you cannot go high or lower,” she demonstrated while raising her voice. “It gets into a spasm.”

Dion, 56, first shared in December 2022 that she has stiff person syndrome. The disorder not only causes stiffness in the torso and limbs, but it also can produce intense muscle spasms, according to the National Institute of Neurological Disorders and Stroke.

In an interview with Vogue in May, Dion said she first began noticing symptoms while on tour in 2008.

“Quite rapidly, I was having difficulty controlling my voice,” she said.

The singer said that she first began feeling it in her throat and initially thought, “OK, that’s going to be fine.”

Celine Dion struggles to now sing.

However, the muscle spasms and stiffness in her hands and feet soon became a serious problem.

“It can also be in the abdominal, can be in the spine, can be in the ribs,” Dion said. “But 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.”

“My feet — it’s cramping, but it’s like in a position of you cannot unlock them.”

“I have broken ribs at one point because sometimes, when it’s very severe, it can break some ribs as well.”

Her declining health forced the singer to cancel her Las Vegas residency in 2021 and her recent Courage World Tour.

Celine Dion says she has suffered muscle spasms so strong that her ribs were broken as a result of her debilitating condition with stiff person syndrome.

She told Vogue France in April that she receives therapy five days a week for stiff person syndrome, working everything from her toes and knees to her voice. The “Titanic” songstress said she doesn’t know if she’ll be able to perform again.

“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 … As things stand, I can’t stand here and say to you: ‘Yes, in four months,‘“ she told Vogue France.

Dion’s full interview with TODAY airs on June 11 (US time).

She also gives a glimpse of her life with stiff person syndrome in the documentary “I Am: Celine Dion,” which will be released on Amazon Prime Video on June 25.

WHAT IS STIFF PERSON SYNDROME

Stiff person syndrome is a rare auto-immune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time.

However, some people experience other symptoms such as an unsteady gait, double vision or slurred speech.

Although there is no treatment that cures stiff person syndrome, working with a specialist and maintaining symptom control can make it easier to live with the condition.

SPS most commonly develops in people ages 40 to 50, but in rare cases, it occurs in children and older adults.

Symptoms include:

• Difficulty walking, and the person might space the feet wide to feel more steady
• A stiff or rigid posture due to ongoing spasms in the back or trunk
• Unsteadiness and falling because of sudden spasms, which can lead to injuries
• Shortness of breath if SPS affects muscles in the chest
• Chronic pain

Originally published as Celine Dion reveals she battled Stiff Person Syndrome for 17 years before going public