Céline Dion's battle with Stiff Person Syndrome: Her journey from first symptoms to finally getting diagnosed
Céline Dion has been struggling for years
Céline Dion began feeling symptoms in 2008.
It took her 14 years to get a diagnosis
She was at the peak of her career when her muscles began to cramp.
Céline Dion lived with chronic pain
She managed to continue her career despite her chronic pain for years.
The Covid-19 pandemic had an impact on her diagnosis
It wasn't until the Covid-19 lockdown in 2020 that she began investigating the cause of her symptoms.
Doctors finally diagnosed her with Stiff Person Syndrome
Fourteen years after the beginning of her symptoms, doctors finally diagnosed her with Stiff Person Syndrome.
What is Stiff Person Syndrome?
Stiff Person Syndrome is a rare condition which causes the person's muscles to spasm.
The syndrome affects her singing voice
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’.
Céline Dion had to live with the disease
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'.
She could not stop performing
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?’
Stiff Person Syndrome has no treatment
After her diagnosis, Céline Dion discovered that her pain and fatigue were permanent, and there is no known cure for the disease yet.
She cancelled concerts in 2021
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’.
She apologised to her fans
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.'
She had to cancel again in 2022
Seeing as she was not getting better, Céline Dion had to cancel other concerts in the beginning of 2022.
She finally began treatment for her condition
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'.
She has not been on stage since 2021
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'.
Céline Dion had to hide her condition
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.'
Her late husband knew about her condition
As the symptoms started when her husband was still alive, Céline Dion shared her daily struggles with him.
Her doctor said managing her symptoms is a 'full-time job'
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’.
Céline Dion announced her diagnosis in 2022
In 2022, the singer officially announced she suffers from Stiff Person Syndrome, and her symptoms were being treated with physical and vocal therapy.
She shares her daily struggles with her fans
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'.
She cancelled even more shows in 2024
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'
Her fans are looking out for each of her appearances
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.
She appeared at a hockey game with her sons
In November 2023, the singer made a surprise appearance at a hockey game, accompanied by her three sons.
'She has good days and bad days'
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'.
Céline Dion doesn't know if she will be able to perform again
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'.
She released a documentary about her journey
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.
She explained the daily symptoms she experiences
Ahead of her documentary release, Céline Dion spoke to NBC News, saying the condition ‘feels like somebody is strangling you’.
She has had to deal with the pain for two decades
In June 2024, Céline Dion revealed to People she has been suffering from chronic pain and muscles cramps for the last 17 years.
Celine Dion's children care for her
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.'
She almost became addicted to painkillers
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.
Céline Dion is learning how to live with the disease
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!
