Celine Dion got emotional as she revealed that she secretly battled stiff person syndrome for 17 years before revealing it to the public, admitting that ‘lying’ to her fans was ‘too much’ for her to bear.
The singer, 56, revealed that she had been diagnosed with the rare autoimmune neurological disorder in 2022, but now, she has shared that she had been grappling with the horrific condition in secrecy for nearly two decades before she told the world about it.
During a preview for an upcoming sit-down with Today show host Hoda Kotb, the hitmaker detailed the pain of having to hide the disorder from her supporters.
Celedion described keeping it 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 like her ‘body was leaving her.’
In a teaser for the upcoming chat, which will air in full on Tuesday at 10pm ET on NBC, Celine Dion explained that when she first started to realize something was wrong, she didn’t ‘take the time’ to figure out what was going on.
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.”
She recalled struggling while her husband, René Angélil, battled his own slew of health woes; he passed away from throat cancer 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 his passing, Celine said she had a hard time balancing raising her kids, 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.’
But she said ‘lying’ eventually became ‘too much,’ adding, ‘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 said, to which Celine replied, ‘I could not do this anymore.’
After the preview for the interview aired on the Today show this morning, Hoda reflected on her and Celine’s chat to her cohosts, and she revealed that the My Heart Will Go On songstress told her she had battled the disease for 17 years.
‘She had it for 17 years and she didn’t know what was wrong and she was worried,’ Hoda said.
‘Her voice was gone, her body was failing her, she was tripping and falling, all these things were happening.’
While the TV star said Celine Dion ‘almost died from it,’ she insisted that she is ‘on the road’ to recovery now.
Stiff person syndrome is a degenerative condition that causes muscles to tense and spasm uncontrollably.
Ultimately, it leaves sufferers resembling ‘human statues as it progressively locks the body, leaving people unable to walk or talk.’
There is no cure for SPS, but there are steps that can be taken to slow down symptoms – something Celine previously revealed she is exploring.
Despite battling the disease for 17 years, Celine continued to perform up until 2022, when she shared her diagnosis with the world and canceled all upcoming shows.
In another part of her NBC interview, the musician described what it’s like to sing with the condition, and she said it feels like ‘somebody is strangling her.’
‘It’s like somebody is strangling you,’ she told Hoda. ‘It’s like somebody is pushing your larynx/pharynx.’
She added that it’s hard for her to control her pitch due to ‘spasms.’
And it doesn’t only affect her voice, as she continued, ‘[The spams] can also be in the abdominal, can be in the spine, can be in the ribs.
‘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 Dion even revealed that the condition has resulted in her ‘breaking ribs.’
‘I have broken ribs at one point because sometimes, when it’s very severe, it can break some ribs as well,’ she shared.
Even so, Celine revealed back in March she still had hopes to get back on stage in an Instagram post in honor of International Stiff Person Syndrome Awareness Day.
‘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,’ she wrote.
‘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 April, she told Vogue France that she is still unsure of what the future holds when it comes to performing.
‘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,’ she explained.
‘As things stand, I can’t stand here and say to you: “Yes, in four months.” I don’t know… My body will tell me.’
She also revealed that she is undergoing ‘athletic, physical and vocal therapy’ five days a week to combat the symptoms.
The artist is currently gearing up to release a tell-all documentary that will offer a heartbreaking glimpse inside her health battle, entitled I Am: Celine Dion.
In a trailer for the Amazon Prime special, which will debut on June 25, Celine broke down in tears as she discussed the disease and the affects it has had on her.
She was seen desperately trying to save her voice, as she explained that she will do anything to sing again.
‘My voice is the conductor of my life,’ she said. ‘When your voice brings you joy, you’re the best of yourself.’
She continued, ‘It’s hard to cancel a show. I’m working hard every day, but I have to admit it’s been a struggle. I miss it so much. The people. I miss them.’