‘Very Painful’: Heartbreaking Story of Céline Dion’s Disease & Snaps That Are ‘Hard to Watch’

In June 2024, she bravely shared her journey in a deeply personal documentary. Snaps capture one of the documentary’s most heart-wrenching moments — the singer suffering a hard-to-watch medical episode.

Céline Dion’s Heartbreaking Diagnosis

In December 2022, the world was shocked when Céline announced she had been diagnosed with Stiff Person Syndrome (SPS), a rare and debilitating neurological disorder. This rare disorder is characterized by severe muscle stiffness and spasms.

Other symptoms include slurred speech and double vision. Sometimes the muscle stiffness can be so extreme that some patients cannot walk. These symptoms are unpredictable and intense, making the condition hard to manage and live with.

“It’s an illness we know so little about. There are spasms – they’re impossible to control. You know how people often jump up in the night because of a cramp in the leg or the calf? It’s a bit like that but in all muscles. There’s little we can do to support her, to alleviate her pain,” Claudette Dion, Céline’s sister, shared.

In June 2024, Céline sat down with TODAY’s Hoda Kotb for an intimate and emotional conversation. It was her first broadcast interview since being diagnosed with SPS. In this interview, Céline revealed she had been battling this “very difficult, very painful” condition for almost 20 years.

For years, doctors were at a loss and could not pinpoint her health issues. This struggle for a diagnosis lasted over ten years, filled with countless tests, treatments, and a relentless search for answers. Finally, Céline was diagnosed with the rare autoimmune neurological disorder.

Despite her health struggles, Céline has continued to thrive in her career over the years. She has won numerous awards and sold out countless shows. However, during her Taking Chances world tour, Céline experienced a particularly distressing moment.

Right before a show in Germany, she panicked, feeling something was wrong. “I was very, very, very scared,” she admitted. Despite this, she took to the stage, embracing her iconic “the show must go on” attitude.

However, Céline soon realized her voice was not the same. She described her voice as sounding “nasal” and not like the version of herself that her fans had come to love. To cope with these changes, her production team made adjustments by lowering the keys of her songs. This allowed her to project her voice without straining too much.

Throughout the years, Céline continued to perform, pushing through the pain and challenges. However, during her emotional TODAY interview, she revealed just how difficult it had been. She described the feeling of being “strangled” every time she sang.

By 2020, Céline had performed 52 shows during her tour despite her condition. Then Covid hit. This unexpected break gave her a much-needed opportunity to rest and recover. Following the lockdown, Céline resumed touring in 2022.

Unfortunately, by April 2022, she had to cancel her tour once again. At that time, she did not disclose the real reason behind the canceled tour, only stating on her website that she was recovering from a “recent health issue.”

Céline expressed her regret and sorrow over the postponement in a heartfelt message to her fans. “I’m so sorry we have to change our tour plans for Europe one more time. First, we had to move the shows because of the pandemic,” she shared.

“Now it’s my health issues causing us to postpone the shows,” the singer continued. At the time, she told her fans she had a sinus infection and then a throat infection. However, behind the scenes, Céline could not bring herself to tell the truth.

Eventually, the burden of hiding her true condition became too much to bear. She candidly admitted, “I could not do this anymore.” Despite the initial postponements, Céline had to make further adjustments to her tour schedule.

She announced the need to postpone the spring performances of her 2023 European Courage World Tour. This decision was undoubtedly heartbreaking for both Céline and her fans. In a heartfelt message, Céline addressed her fans directly, sharing her ongoing struggles and her hopes for recovery.

“I’ve been dealing with problems with my health for a long time. It’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through,” she shared.

“It hurts me to tell you that I won’t be ready to restart my tour in Europe in February…I miss seeing all of you…being on stage…performing for you. I always give 100% when I do my shows, but I can’t give you that right now,” Céline continued.

Céline Dion’s Courageous Reveal in “I Am: Celine Dion”

In 2024, Céline made a grand return to the public eye by attending the premiere of her deeply personal documentary, “I Am: Celine Dion.” This was her first red carpet-appearance since she announced her diagnosis with SPS.

Céline was in good spirits, radiating elegance in an all-white Dior ensemble, which included a silk skirt paired with a matching blouse featuring a tie-neck. As she presented the film, her emotions were clear.

Accompanying her on the red carpet was her eldest son, René-Charles Angélil, who looked dashing in a classic suit. “This is, by far, the biggest crowd I’ve had in a few years,” she remarked after taking the stage at the premiere.

“I miss that,” she confessed to her audience, her voice tinged with emotion. She expressed her profound gratitude, saying, “I cannot believe how fortunate I am to have my fans in my life. Thank you. Thank you to all of you from the bottom of my heart for being part of my journey. This movie is my love letter to each of you.”

Céline also took a moment to acknowledge the support of her three children. “I am grateful for the support of my children, for their daily love and support,” she said. “I love you very much.”

She ended with a hopeful promise to her fans: “Your presence in my journey has been a gift beyond measure. Your never-ending love and support over all these years have delivered me to this moment. I hope to see you all again very, very soon.”

Céline’s documentary was raw and intimate, showing her battle with SPS. Leading up to the premiere, she had been sharing glimpses of her documentary through an official trailer and sneak peeks. Among these clips, one stood out for its raw, painful honesty.

The “difficult to watch” clip captured the singer during a severe muscle spasm attack. Céline was at her doctor for a routine check-up when she suddenly had a health episode. The scene is heartbreaking as she is briefly paralyzed, shedding tears of pain.

Céline revealed that sometimes her spasms are so severe that she can break a rib. The vulnerability and honesty in this clip were difficult to watch. “Every time something like this happens, it makes you feel so embarrassed,” she admitted.

Yet, it was important for her to share. Céline was adamant that this nearly 10-minute-long episode was not left on the editing room floor. She wanted her fans to see first-hand the devastating effects of the disease.

During her interview with Hoda, Céline was asked if she ever wondered, “Why me?” Her response was filled with grace and wisdom. “I could have gone that route,” she acknowledged. “What is it going to do for me to question life and say ‘why me’ instead of living my life?”

The Toll of Stiff Person Syndrome on Céline Dion’s Family

Céline’s battle with SPS has not only affected her professional life but has also deeply impacted her family. One of the saddest parts of her condition is the unpredictability of her episodes, which made it necessary for Céline to prepare her two younger sons.

Céline shares her twins and eldest son with her late husband of more than two decades, René Angélil. The singer revealed that she had educated her sons on how to handle her sudden attacks.

Céline Dion with her twin sons at an ice hockey game on March 21, 2024, in Boston, Massachusetts. | Source: Getty Images

Céline Dion performing live on December 9, 2019, in Toronto, Canada. | Source: Getty Images

Céline Dion performs live on July 5, 2019, in London, England. | Source: Getty Images