Photos : Céline Dion's battle with Stiff Person Syndrome: Her journey from first symptoms to finally getting diagnosed
Céline Dion began feeling symptoms in 2008.
She was at the peak of her career when her muscles began to cramp.
She managed to continue her career despite her chronic pain for years.
It wasn't until the Covid-19 lockdown in 2020 that she began investigating the cause of her symptoms.
Fourteen years after the beginning of her symptoms, doctors finally diagnosed her with Stiff Person Syndrome.
Stiff Person Syndrome is a rare condition which causes the person's muscles to spasm.
In an interview with the BBC, Céline Dion explains she felt distressed as she noticed a change in her voice:
‘It was just feeling a little strange, like a little spasm. My voice was struggling, I was starting to push a little bit’.
As her voice was impacted, she sometimes had to ask her musicians to bring the keys down a notch. She told the BBC:
'I needed to find a way to be on stage'.
As she dealt with her spams undiagnosed, she explains she could not stop performing:
'These shows were sold out for a year and a half, going around the globe. And I’m going to say to people, ‘Excuse me about my spasm? Excuse me about my je ne sais quoi?’
After her diagnosis, Céline Dion discovered that her pain and fatigue were permanent, and there is no known cure for the disease yet.
Her illness forced her to cancel her first concerts in October 2021. In her statement, she explained her cancellation was due to ‘unforeseen medical symptoms’ including ‘severe and persistent muscle spasms’.
In her statement, the singer apologised to her fans, saying:
'I'm heartbroken by this. My team and I have been working on our new show for the past eight months, and to not be able to open this November saddens me beyond words.'
Seeing as she was not getting better, Céline Dion had to cancel other concerts in the beginning of 2022.
Céline Dion told her fans she had begun a treatment for muscle spasms, saying:
'I was really hoping that I'd be good to go by now, but I suppose I just have to be more patient and follow the regimen that my doctors are prescribing'.
Since her diagnosis, the singer has kept her fans updated. This was the case in 2022, when she had to cancel all her concerts:
'The good news is that I'm doing a little bit better but it's very going very slow, and it's very frustrating for me'.
Despite struggling with the disease, Céline Dion chose to keep it a secret from the public for years. She recently explained that she was trying to ‘hold on to her dreams’ and be strong for her family, especially after the death of her husband. She said:
'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.'
She added:
'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.'
As the symptoms started when her husband was still alive, Céline Dion shared her daily struggles with him.
Dr. Amanda Piquet, the physician who diagnosed Céline Dion with SPS, told PEOPLE that the singer's treatments alone are a ‘full-time job’, adding that she is ‘incredibly motivated and determined’.
In 2022, the singer officially announced she suffers from Stiff Person Syndrome, and her symptoms were being treated with physical and vocal therapy.
She told her fans in an emotional video in 2022:
'I'm working hard with my sports medicine therapist every day to build back my strength and my ability to perform again. But I have to admit, it's been a struggle'.
In 2023, Céline Dion announced she could not get back on stage in 2024, telling her fans on X:
'I'm so sorry to disappoint all of you once again... and even though it breaks my heart, it's best that we cancel everything until I’m really ready to be back on stage... I'm not giving up… and I can't wait to see you again! – Celine xx'
Céline Dion's fans are very worried about the singer's health, which is why they are so happy to see her out every time she appears at an event.
In November 2023, the singer made a surprise appearance at a hockey game, accompanied by her three sons.
Chantal Machabée, vice president of hockey communications for the Montreal Canadiens, told People at the time:
'She's been through a lot, and to see her like this and smiling and being so happy...it's amazing. I know she has good days and not so good days, but this was a very good day, and it was reassuring'.
In April 2024, the singer told Vogue France she doesn't know if she will ever be able to go on tour again:
'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. On the other hand, I don't just want to wait'.
In 2024, Céline Dion announced she was releasing a documentary entitled I Am: Céline Dion, which was released on Amazon Prime Video on 7 June.
Ahead of her documentary release, Céline Dion spoke to NBC News, saying the condition ‘feels like somebody is strangling you’.
In June 2024, Céline Dion revealed to People she has been suffering from chronic pain and muscles cramps for the last 17 years.
In June 2024, she also revealed to People that she does crisis drills with her twins so they know how to help in the case that she needs it. She said:
‘We have panic buttons in the house and they know how to put me on my side.’
And continued:
'The idea of telling them and showing them, it was not to frighten them. It is for them to know, 'I'm your mom and it's my responsibility. You're old enough to understand I might need your help.'
As the pain increased, she was taking more and more pills. On French TV channel TF1, Céline Dion explains she was taking high doses of valium to perform.
As Stiff Person Syndrome does not have a cure yet, Céline Dion is fighting for her life as she learns to live with the disease. Thankfully, she keeps her fans updated and they never miss an opportunity to support her!
