Celine Dion endures emotional rollercoaster with Stiff Person Syndrome: 'Why me?'

Celine Dion is arguably one of the best singers ever and moulded a generation of songstresses. Who wouldn't know her iconic single My Heart Will Go On?

The Grammy Award-winning artist has always connected with her audience through her music.

Now, she shares another aspect of her life—one marked by vulnerability and resilience.


In an interview with Vogue France, Dion revealed her inner turmoil as she battles a rare and debilitating health condition known as Stiff Person Syndrome (SPS).

Stiff Person Syndrome is a rare neurological disorder characterised by severe muscle stiffness and spasms triggered by external stimuli such as noise, light, and emotional distress.

Dion described her current state as 'well, but it's a lot of work', emphasising the need to manage her condition.


compressed-celine dion.jpeg
Celine Dion released her full-length album ‘Courage’ a few years before going on an indefinite hiatus due to Stiff Person Syndrome. Image Credit: Facebook/Celine Dion


She's taking life 'one day at a time' and holds onto hope for a 'miracle cure' while confronting the challenges that her condition brings to her.

'I work on my toes, my knees, my calves, my fingers, my singing, my voice,' she shared. 'I have to learn to live with it now and stop questioning myself.'

'At the beginning, I would ask myself—" Why me? How did this happen? What have I done? Is this my fault?"' she emotionally asked.


Since her diagnosis in December 2022, Dion stepped back from the limelight and put her activities on hold to prioritise her health.

Her days are filled with 'athletic, physical and vocal therapy', a rigorous regimen she undergoes five days a week.

Despite the uncertainties, Dion focused on her recovery and the things that gave her strength.

'Life doesn't give you any answers. You just have to live it,' Dion shared with a sense of acceptance and determination.

'The way I see it, I have two choices—either I train like an athlete and work super hard, or I switch off, and it's over. I stay at home, listen to my songs, stand in front of my mirror and sing to myself.'

Dion is committed to being the best she can be, thanks to her unwavering will and her medical team to keep her in check.


At 55, Dion's spirit remains unbroken, bolstered by the love and support of her family, friends, and legions of fans worldwide.

'People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments. I have those means, and this is a gift,' she said as she acknowledged her access to top-notch healthcare and support.

'What's more, I have this strength within me. I know that nothing is going to stop me.'


While there's no telling when Celine Dion will recover from Stiff Person Syndrome or when she can return onstage, she assured her fans that her determination will not waver.

'I'm working very hard, and tomorrow will be even harder—but there's one thing that will never stop, and that's the will. It's the passion. It's the dream. It's the determination.'

Celine Dion's story is a powerful reminder: we may not control the cards we're dealt, but we have a say in how we play them.

You can read through Celine’s full interview with Vogue France here.
Key Takeaways

  • Celine Dion made a heartfelt admission about her struggles with Stiff Person Syndrome in an interview with Vogue France.
  • The singer used to question her condition, which she later accepted and decided to work hard to get better.
  • Dion has been undergoing athletic, physical and vocal therapy five days a week and is determined to improve.
  • Though her future in live performances is uncertain, she remains hopeful and motivated by her love of singing and the support of her fans and medical team.
We wish Celine Dion all the best in her health journey.

Share your thoughts and messages of support for Celine Dion in the comments section below.
 
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Certainly very hard to cope with ,day to day . I have my doubts she will ever be able to return to performing as all the triggers for this condition are related to being on stage . Noise .
,light and emotional stress .
As a performer I understand the levels of stress and I am no where near the level she works at .
Its a huge undertaking to put shows on .it’s like a military operation and each one has to be better than the last .
I know she will have a team to work with but still all final decisions rests on her shoulders , which I guess her husband did for her and this has all happened since he died , I think there is a connection .
Maybe some smaller more intimate gigs would be the way to go to get back to singing without all the added pressures .
 
I hope the gets better soon , she is a beautiful singer , I went to see her in concert a number of years ago and she sings very well life.
I feel for her condition and i can relate to that as I have very stiff muscles early in the morning and I go straight into my gym room and do some cardiac workout , I start slow and after 10 minutes the pain is getting a lot less and I increase my exercise until I have done just over 40 minutes and after that I do at least 20 roll ups on the mat and after that I’m ready for the day and do my own thing , like gardening , craft , go to the gym and go to rock and roll dancing and there are very few people aware of my condition. If I would not have done my exercises , I would have pain the whole day , so you have to be strong and go through that pain barrier.
 

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