Why Celine Dion Hid 17-Year Battle With Stiff Person Syndrome

Celine Dion has revealed she kept her 17-year battle with stiff person syndrome a secret while managing her husband’s cancer battle and raising their children. The burden of hiding her diagnosis became overwhelming.

Despite almost dying from the condition, she is now on the road to recovery. Dion described the painful impact the disorder has had on her singing and daily activities.

Celine Dion has since expressed her determination to return to the stage and her gratitude for the support from her family and fans.

Dion recently opened up about her 17-year struggle with stiff person syndrome, revealing the emotional toll of keeping her diagnosis a secret.

In a teaser for an upcoming interview on the “Today” show, the iconic singer shared that she initially overlooked her symptoms and did not take the time to investigate what was wrong. It also coincided with her husband René Angélil’s battle with throat cancer, which led to his passing in 2016.

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

Following her husband’s death, the “I’m Alive” singer faced the immense challenge of balancing her career and raising her children while keeping her worsening health condition 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 explained per the Daily Mail. “I was holding on to my own dreams.”

The 56-year-old  admitted that hiding the truth became overwhelming.

“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,” she stated.

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

After the preview of the interview aired on the “Today” show, Kotb reflected on the conversation and revealed that Dion had battled the disease for 17 years without knowing the cause.

“She had it for 17 years and didn’t know what was wrong, and she was worried,” Kotb added. “Her voice was gone, her body was failing her, she was tripping and falling.”

Though Dion “almost died from it,” Kotb assured that she is “on the road to recovery now.”

In another part of the “Today” interview, Dion described the challenges of singing with her condition, likening it to being strangled.

“It’s like somebody is strangling you,” she said, “like somebody is pushing your larynx/pharynx.” The Queen of Power Ballads added that muscle spasms make controlling her pitch difficult.

The disorder affects more than just her voice. “The spasms can also be in the abdominal, spine, or ribs,” she explained. “If I point my feet, they will stay [stuck in that position], or if I cook – because I love to cook – my fingers, my hands, will get in a position. My feet – it’s [like] cramping, but it’s like [they get] in a position, and you cannot unlock them.”

Celine even revealed that the condition had caused her to have broken ribs. She noted, “I have broken ribs at one point because sometimes when it’s very severe, it can break some ribs as well.”

In March, the “All by Myself” singer expressed her hopes of returning to the stage in an Instagram post for International Stiff Person Syndrome Awareness Day.

She wrote, “Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible.”

Dion added, “I am deeply grateful for the love and support from my kids, family, team, and all of you. I want to send my encouragement and support to all those around the world that have been affected by SPS. I want you to know you can do it. We can do it.”

In the trailer for her new documentary, “I Am: Celine Dion,” the singer breaks down in tears over her condition.

“I’m working hard every day, but I have to admit, it’s been a struggle,” Dion says. “I miss it so much.”

With tears in her eyes, the Grammy winner continued, “The people, I miss them,” and expressed her determination to return to performing.

“If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. And I won’t stop. I won’t stop,” Dion declared.

Dion first revealed her diagnosis of stiff person syndrome in December 2022. In an emotional Instagram video announcing her diagnosis at the time, the “I’m Alive” singer asserted: “All I know is singing. It’s what I’ve done all my life, and it’s what I love to do the most.”