Celine Dion and her loved ones have offered health updates amid her battle with stiff-person syndrome. Dion revealed in December 2022 that she had to postpone several performances due to the health scare.
“Hello, everyone. I’m sorry it’s taken me so long to reach out to you. I miss you all so much and I can’t wait to be on stage talking to you in person. As you know, I’ve always been an open book and I wasn’t ready to say anything before, but I’m ready now,” an emotional Dion said in an Instagram video at the time. “I’ve been dealing with problems with my health for a long time and it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through.”
According to the Mayo Clinic, stiff-person syndrome is a rare disorder of motor function characterized by involuntary stiffness of axial muscles and superimposed painful muscle spasms, which are often induced by startle or emotional stimuli.
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Scroll down for everything Dion and her family have shared about her health battle:
Breaking Down the Diagnosis
In December 2022, Dion said she had “no choice but to concentrate” on her health ahead of her career.
“I have hope that I’m on the road to recovery. This is my focus and I’m doing everything that I can to recuperate,” she said via Instagram. “Take care of yourselves. Be well. I love you guys so much and I really hope I can see you again real soon.”
Focusing on Her Recovery
“I have a great team of doctors working alongside me to help me get better and my precious children, who are supporting me and giving me hope,” Dion noted in her December 2022 Instagram video. “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.”
While a source later told Us Weekly that the diagnosis came as a “shock” to Dion, they noted she had not lost “her fighting spirit and is comforted that at least she knows exactly what she’s dealing with now and there’s comfort that she can alleviate some of the symptoms by getting treatments that are specific for this condition.”
Having Her Loved Ones by Her Side
“Her kids have been her rock … the twins are very mature for their age and René-Charles checks in and dotes on his mom all the time,” the insider went on to share. “Celine received this diagnosis fairly recently; she’s been suffering the symptoms for quite some time, but it always baffled her what was wrong.” (Dion shared son René-Charles and twins Nelson and Eddy with late husband René Angélil, who died of throat cancer at age 73 in January 2016.)
Her sister Claudette also opened up about how the family has been helping the performer. “When I call her and she’s busy, I speak to my sister Linda who lives with her and tells me that she’s working hard. She’s listening to the top researchers in the field of this rare disease as much as possible,” she told Le Journal de Montreal in 2023. “We trust her. It’s innate to her, she’s disciplined in every area of her life … We can’t find any medicine that works, but having hope is important.”
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Claudette continued: “I honestly think that she mostly needs to rest. She always goes above and beyond, she always tries to be the best and top of her game. At one point, your heart and your body are trying to tell you something. It’s important to listen to it.”
In an August 2023 interview with Hello! Canada magazine, Claudette called Dion a “strong woman” and noted that “she’s doing everything to recover.” She told the outlet that while there is little she and the rest of Dion’s family “can do to support her, to alleviate her pain, they are “crossing our fingers that researchers will find a remedy for this awful illness.”
The Illness Is Progressing
“She works hard, but she doesn’t have control of her muscles,” Claudette told Canadian magazine 7 Jours of her sister’s condition in December 2023. “What pains me is that she has always been disciplined. She always worked hard.”
Claudette revealed that it’s a “dream” of both Céline and the family that she will “return to the stage” one day. “In which state? I do not know,” Claudette confessed. “The vocal cords are muscles, and the heart is also a muscle. This is what [gets to] me. Since it’s one case in millions, scientists didn’t do that much research, because it didn’t affect that many people.”
Céline’s sibling explained that while,
“There are some who have lost hope because [it] is a disease that is not known,” many fans have continued to reach out with well wishes. “People tell us they love her and pray for her. She receives so many messages, gifts, and blessed crucifixes,” Claudette said.
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Not Letting Her Health ‘Define’ Her
“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,” Céline shared in a January 2024 statement while announcing her Prime Video documentary,
I Am: Céline Dion.
“As the road to resuming my performing career continues:
I have realized how much I have missed it, of being able to see my fans,” she added. “During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.”
Words of Encouragement
Céline commemorated International Stiff Person Syndrome Day in March 2024 by sharing a rare Instagram photo of herself and her kids. “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 captioned the post. “I am deeply grateful for the love and support from.”
She concluded her message by sending her “encouragement and support to all those around the world that have been affected by SPS,” adding, “I want you to know you can do it! We can do it!”
The Fight Goes On
Céline offered insight into her stiff person syndrome battle in an May 2024 Vogue France cover story interview. “I haven’t beat the disease, as it’s still within me and always will be. 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. So that’s me, now with Stiff Person Syndrome,” she told the magazine.
The singer went on to note that she undergoes “athletic, physical and vocal therapy” five days a week in addition to working on “my toes, my knees, my calves, my fingers, my singing [and] my voice.”
She added: “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?”
Céline stated that although “life doesn’t give you any answers,” you must keep living it.
“I have this illness for some unknown reason. 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,” she stated. “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!
More than a year after announcing her health issues were due to stiff person syndrome, a rare and incurable neurological and autoimmune condition that causes severe muscle spasms and stiffening in the limbs — and in Celine’s case issues with her Vocal Cords — she’s in a fight for her life. Her struggle is something she swore she would never talk about, but sharing helps her connect with her beloved fans.
After canceling her World Tour, her future as an entertainer remains uncertain. People who suffer from SPS may not be lucky enough to have the means to have the best doctors and treatments as she does. What’s even greater is I have the inner strength in me to try and overcome. Celine is working hard to improve her body — and her mind. Five days a week I undergo athletic, physical and vocal therapy as she must learn to live with the debilitating condition.
Agonizing Rehab
Resisting negativity is a huge component of her approach to battling this condition, which affects fewer than 5000 in the United States. “She is putting on a brave front and doing her best to stay upbeat because he believes a positive attitude in adversity is a key to a happy life.” Celine may not overcome SPS, but she has learned to accept it. As my diagnosis sunk in. the singer realized she had a choice to make.
“Either I train like an athlete and work super hard or I switch off and it’s over,” she said, “I’ve chosen to work with all my body and soul, from head to toe with a medical team.’
She admits she’s had her dark days “At the beginningI would ask myself Why me? Why anybody? Why did this happen? What have I done? Is this my fault? What I learned if life doesn’t give you answers you only get to live it.
Then I told myself I have this disease for some unknown reason. In those early months Celine beat herself up a lot realizing she had to cancel a World Tour. Then she realized she had a lot to be thankful for and she is grateful she’s able to tell her story. In a new documentary I AM: Cleine Dion — described as a love letter to fans which will debut June 25 on Prime Video.
The five-time Grammy Winner gave the filmmaker unprecedented access to her life for more than a year to capture how she’s coping with the physical and mental repercussions of Stiff Person Syndrome to try to raise awareness of this little-known condition and help others who share this diagnosis. In the footage, says a source, she laughs, she cries, she sings. It’s a very emotional raw look at her life now.
May 13, 2024, Issue