Celine Dion fights back tears and admits lying to fans for years as she gives update on Stiff Person Syndrome battle
A NEW bombshell documentary on Celine Dion lays bare the illness which has torn her life apart.
In I Am: Celine Dion the superstar admits she has secretly been suffering from Stiff Person Syndrome for TWO DECADES, though she only told the world about it in 2022.
The rare neurological condition causes muscle spasms and stiffness, and Celine has now confessed she spent years taking more and more medication to treat it so she could keep performing.
The singer, who last played live in 2020, says in the film: “I needed my instrument but my instrument was not working. So we started to elevate the medicine. That was 80 to 90mg of valium a day.
“That’s just one medicine. I don’t want to sound dramatic but I could have died. I was taking those medicines because I needed to walk. I needed to be able to swallow. I needed medicine to function. One more pill, two more pills, five more pills, too many pills. The show must go on.”
As her condition worsened she was forced to cancel more and more shows. She made excuses before finally coming clean about her diagnosis.
On how she covered it up, even when she suffered vocal spasms on stage, she explains: “When I had to cancel shows, we had to tell the crowd why and . . . Lying. I can’t lie any more. From a sinus infection to an ear infection to whatever . . . Sometimes I would point my microphone towards the audience and I would make them sing.
“There’s moments where I cheated and I tapped the microphone like it was the microphone’s fault. And there’s moments where we had to stop the show. Quick change and I never came back.”
In footage filmed in 2021, Celine says: “17 years ago I started to experience some voice spasming. This is where it started. I woke up one morning and had my breakfast and afterwards my voice started to go up and it freaked me out.
“It’s in the muscles, it’s in the tendons, it’s in the nerves. It’s not seeable.
“Last year I got to a point where I couldn’t walk. I was losing my balance a lot. It was hard to walk, a lot of pain. I couldn’t use my voice. I miss it a lot.”
The most distressing moment in the film, out on Prime Video on June 25, is a lengthy scene which shows Celine suffering a seizure, becoming so stiff she can’t move and only able to moan in pain and cry.
Thankfully medics are on hand to help her recover, but it shows the terrifying extent of a condition which impacts one in a million people.
She says afterwards: “Every time something like this happens it makes me feel so embarrassed. You don’t want to not have control of yourself.”
At one point she struggles to sing, then breaks down in tears, saying: “It’s very difficult for me to show this.”
Yet at the end she insists she will do whatever it takes to continue and is determined to return to the stage.
What are the symptoms of Stiff Person Syndrome?
Symptoms of Stiff Person Syndrome can take several months to a few years to develop.
The severity and progression of SPS can also vary from one person to another.
The first signs of the condition are intermittent spasms, which then become continuous. However, experts say that spasms don’t usually occur during sleep.
Symptoms include minor sensory stimuli – those with this symptom would notice they have become more sensitive to noise, light, and touch.
Other symptoms to look out for are pain, severe spasms, and impaired breathing (in advanced cases).
Many people with SPS will experience falls because they lack defensive reflexes, experts at the National Institute of Neurological Disorders and Stroke added.
Affected individuals should talk to their doctors about their symptoms.
She signs off: “I still see myself dance and sing. I always find plan B and C.
“If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop.”