Celine Dion says 'I train like an athlete and work super hard' to address stiff person syndrome

Celine Dion admits she worried her health troubles were own fault. "At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault?” she told Vogue France.

But she's learned to live with stiff person syndrome, a diagnosis she revealed she received two years ago, and “stop questioning myself," she added.

Stiff person syndrome is a rare neurological disorder that can cause stiffness and muscle spasms, and make it difficult to do a number of things including singing for some patients.

The singer has stepped back from the spotlight and, in a rare occurrence, talked about life with the illness and her hope for a life without it. Dion told Vogue France, “I hope that we’ll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it.”

“I haven’t beat the disease, as it’s still within me and always will be,” Dion said.

To mitigate her symptoms, Dion is getting physical, athletic and vocal therapy five days a week. “I work on my toes, my knees, my calves, my fingers, my singing, my voice,” she said

Dion says she has 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,” she said. “I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!”

An upcoming documentary will focus on Celine Dion's health. This summer, fans of the legendary singer will get a close-up look at her journey after she was diagnosed with stiff person syndrome.

The film, titled "I Am: Celine Dion," will be available to stream on Prime Video starting June 25, 2024. When announcing the date on Instagram, Dion shared a glimpse with fans of her life during the doc — a picture of herself in profile as she fiercely holds up a fist.

"Directed by Academy Award nominee Irene Taylor, I AM: CELINE DION gives us a raw and honest behind-the-scenes look at the iconic superstar’s struggle with a life-altering illness," Dion's team wrote in the caption of the post. "Serving as a love letter to her fans, this inspirational documentary highlights the music that has guided her life while also showcasing the resilience of the human spirit."

Dion has shared some updates with fans about her health since announcing her diagnosis in December 2022. The previous year, she was forced to cancel her Las Vegas residency due to health issues. She also had to cancel her Courage World Tour through 2024.

How is Dion's health today? Will she be able to tour again? Here's what we know about her diagnosis and previous health struggles.

How is Celine Dion doing now?

Dion shared updates about the vocal, physical and athletic therapy she's receiving for stiff person syndrome in an interview with Vogue France. While she trains, she says she's hoping for a cure.

During this time, support from family, her children and her fans are keeping her going but she's also finding the strength within herself to look after her body as best she can. And she's grateful for the access she has to great care.

“People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments,” Dion said. “I have those means, and this is a gift. What’s more, I have this strength within me. I know that nothing is going to stop me.”

On March 15, Dion shared a photo with her three sons to mark International Stiff Person Syndrome Awareness Day. She wrote in the caption that she is sending “encouragement and support” to those affected by the disorder.

“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,” Dion said.

She also expressed gratitude for the support she’s received from family, friends and fans.

“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!” she concluded.

Earlier in March, the pop icon was photographed in New York City and appeared to be doing well as she smiled at the camera and gave a thumbs-up, E! News reported.

In February, Dion took the stage at the 2024 Grammy Awards to present the last and most prestigious award of the night, album of the year, naming Taylor Swift the winner. She surprised the audience when she appeared and was escorted to the microphone to give a moving speech about the power of music.

“Thank you all, I love you right back,” she said as she received a standing ovation. “When I say, I’m happy to be here, I really mean it from my heart.”

For the occasion, Dion sported a pale-pink gown with a mustard-colored coat from Valentino and a chic bob. Stylist Law Roach posted a video of the singer on Instagram at the event with the caption, “We’re BACK…… @celinedion.”

Dion also sang behind the scenes at the event, harmonizing with singer Sonyae Elise in a video on Instagram. Dion was all smiles as she performed, even if it wasn't on the main stage.

A few days later, Dion seemed to have a lot of energy when she visited NHL team the Edmonton Oilers' locker room on Feb. 6. In the video shared to the hockey team's Instagram on March 8, Dion gestured excitedly and even had one of the players laughing.

When first announcing her documentary in January, Dion's team share a short update on her health, writing that the singer is "on the road to resuming her performing career."

“This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me,” Dion said in the release.

Dion previously opened up about her health status in May 2023. At the time that she announced that she was canceling the rest of her tour, she also shared about her efforts to manage her stiff person syndrome, especially when it comes to performing.

On her website, Dion wrote that she’s “working really hard to build back (her) strength,” adding that touring can be very challenging even for people in peak health. But, she stressed that she’s “not giving up” and is determined to return to the stage at some point. “I can’t wait to see you again!” she told fans in her message. She also called having to cancel "a tremendous disappointment."

Prior to her stiff person syndrome diagnosis, Celine’s last major projects were the earlier dates in her Courage World Tour — she completed 52 performances in North America — and filming her first movie in 2021. She starred as herself in “Love Again” alongside Priyanka Chopra and Sam Heughan. Dion also recorded several songs for the film’s soundtrack, including the ballad “Love Again.”

Will Celine Dion be able to perform again?

As for whether Dion will tour again, she doesn't know. When asked about performing again during a Vogue France interview Dion said “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... As things stand, I can’t stand here and say to you: ‘Yes, in four months.’”

Her body will let her know if and when she's ready. For now, she said, it's hard living day by day. “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.”

The January 2024 press release for her documentary noted that her "road" to resume performing is continuing. She did not perform at the 2024 Grammys, instead announcing the last award of the night.

When she canceled her tour in May 2023, the announcement explained that her symptoms of stiff person syndrome, namely “severe and persistent muscle spasms,” were preventing her from performing.

That said, the singer and her team have both said that they expect her to be able to perform again at some point. For example, in May 2023, Dion stressed that she was trying to regain her strength with the goal of hitting the stage. At the time, her team also said they “have every hope that someday soon” she’ll be able to tour in Europe.

While every person’s situation is different, some people are able to manage the symptoms of stiff person syndrome, Dr. Desimir Mijatovic, a pain medicine specialist with the Cleveland Clinic in Ohio, told TODAY.com in 2022.

“A lot of people are able to make recovery to the point that their condition is stable. They’re not worsening anymore. They can continue to live fairly mobile (lives),” he said.

Mijatovic is not involved in Dion’s care, but he said it is not outside the realm of possibility that Dion could perform once more.

“People like Celine are oftentimes able to overcome a lot of amazing things, and I definitely think it’s something that’s possible,” he said.

Celine Dion shared she has stiff person syndrome in 2022

Dion revealed in December 2022 that she’d been diagnosed with stiff person syndrome and would be postponing tour dates due to the condition. In May 2023, she canceled her remaining tour due to the disorder and shared that she was still being treated for it. Her health problems had previously forced her to announce tour date cancelations in January 2022 and April 2022.

Stiff person syndrome is a rare neurological disorder. Symptoms of the progressive condition may include stiff muscles in the torso, arms and legs, as well as muscle spasms that may be triggered by noises, touch or emotional distress, according to the National Institute of Neurological Disorders and Stroke.

The condition can have a severe effect on quality of life. People with stiff person syndrome may develop hunched postures and may struggle to walk or move. People may also fall more frequently because they lack the muscle reflexes to catch themselves, which can lead to injury.

Dion opened up about her stiff person syndrome diagnosis in a video posted on her Instagram page in December 2022.

“We now know this is what’s been causing all of the spasms that I’ve been having,” she said. “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”

“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 continued. “All I know is singing. It’s what I’ve done all my life and it’s what I love to do the most.

“I miss you so much. I miss seeing all of you, being on the stage performing for you. I always give a hundred percent when I do my shows, but my condition is now allowing me to give you that right now,” she added.

There is no cure for stiff person syndrome, although symptoms may be kept under control with certain drugs, as well as physical, occupational and aqua therapy, according to Yale Medicine.

She had to cancel performances for ear surgery

In 2018, Dion had to cancel nearly a month of shows at her Las Vegas residency to undergo ear surgery.

The singer was dealing with a condition called Patulous Eustachian tube dysfunction, which occurs when the tube that connects the middle ear to the sinus cavity remains open, according to Johns Hopkins Medicine.

The condition was causing Dion to have “hearing irregularities and making it “extremely difficult to sing,” her team explained in a Facebook statement at the time.

Dion’s team said the singer planned to undergo minimally invasive surgery to correct the problem.

“My luck hasn’t been very good lately... I’ve been so looking forward to doing my shows again and this happens…. I just can’t believe it!” Dion said in a message to fans on Facebook.

She had fertility challenges and did IVF

Dion underwent in vitro fertilization (IVF) before she and her late husband, René Angélil, welcomed their first son, René-Charles, in 2001.

She also opened up about her fertility issues as she and Angélil tried for a second baby.

“We didn’t want to feel like we were playing yo-yo. ‘I’m pregnant. I’m not pregnant. I’m pregnant. I’m not pregnant,’” Dion told Oprah Winfrey in 2010. “So, we didn’t want to do this thing. But we did (have) a miscarriage. We tried four times to have a child. We’re still trying. We’re on the fifth try. And I tell you, if five is my lucky number, this fifth try has got to come in.”

In the end, the singer underwent six rounds of IVF.

“These treatments were truly hard on my wife’s body,” Angélil told the French-language Le Journal de Montreal, as translated by People. “It wasn’t simple at all.”

Dion’s fertility treatments were eventually successful and in October 2010, she gave birth to twin boys, Nelson and Eddy.

She has addressed speculation about her weight

Dion has long pushed back against speculation that she has an eating disorder. “I don’t have an eating problem, and there’s nothing more I can say about it,” she told People in 1999.

“I’m very thin,” she added. “I don’t even train. I’m lucky.”

She also asked people to stop commenting on her weight in a 2019 People interview, addressing online speculation about her physique.

“If I like it, I don’t want to talk about it. Don’t bother. Don’t take a picture,” she said. “If you like it, I’ll be there. If you don’t, leave me alone.”

She addressed rumors about her appearance in another People interview earlier that year, saying she had lost some weight due to her intensive ballet practice routine.

“I do this four times a week,” Dion said. “People say, ‘She’s a lot thinner,’ but I’m working hard. I like to move, and (weight loss) comes with it.”

She was injured due to part of her wedding ensemble

In addition to opening up about stiff person syndrome, Dion also told Vogue France about what she wore on her wedding day in 1994 to Angélil. One of her accessories was a crystal headpiece that was sown onto her head. When she first tried on the ensemble, she said she felt "no weight" and "no pain."

But on her wedding day, the floor was made of carpet rather than wood, and she said she had "an immediate facelift." At the end of the night when she took the tiara off, she had a cut in her head due to the pressure of the piece. The next day, she had a bump "the size of an egg" on her forehead, she said.

"It’s so huge that it makes my eyes look like this,” she said, crossing her eyes. "I'm like, 'OK, let's go to the doctor. So I had to be on antibiotics for about three weeks."

This article was originally published on TODAY.com