Céline Dion says stiff person syndrome feels like being ‘strangled’

• The singer, 56, was diagnosed with the rare neurological disorder in 2022
• Now, she has spoken out about the agonizing symptoms of her illness to Today
• She detailed how it affects her ability to do what she loves most: perform

Celine Dion has revealed that singing with stiff person syndrome makes her feel like ‘somebody is strangling her’ – months after she admitted that she was ‘determined’ to get back on stage and perform again.

The singer, 56, was diagnosed with the rare autoimmune neurological disorder in 2022, and was forced to cancel all future tour dates as a result.

Now, she has spoken out about the agonizing symptoms of her illness to the Today show, including how it affects her ability to do what she loves most: perform.

‘It’s like somebody is strangling you,’ she told the publication, when asked what it’s like to try to sing with the condition. ‘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 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.

In March, Celine said 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.’ 

One month later, 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.’

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 revealed she is exploring. 

She told Vogue that she is undergoing ‘athletic, physical and vocal therapy’ five days a week to combat the symptoms.

Last month, The Sun reported that the musician is planning to perform for one last time in a TV special.

‘Celine is not giving up on her desire to sing again,’ a source said. ‘She has been working with voice coaches, band members and specialists for over six months now.

‘She believes she could release a concert film featuring her playing her biggest hits.’ 

The My Heart Will Go On songstress is 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.’

Celine stepped out for a rare outing last month when she attended the Rolling Stones concert in Las Vegas. 

She could be seen moving and grooving to some of the English rock bands biggest hits. 

In March, she made an appearance at the Boston Bruins vs New York Rangers hockey game with her twin sons, Eddy and Nelson, 13.

She also attended the Grammy awards in February, where she presented Taylor Swift with the Album of the Year award. 

Celine’s full interview with the Today show will air on June 11 at 10pm ET on NBC.