Celine Dion opened up about her attempts to deal with the pain from her then-undiagnosed Stiff Person Syndrome, revealing that she began taking high doses of Valium to control her symptoms.
The Canadian pop icon, 56, first disclosed her diagnosis with the rare and incurable autoimmune neurological disorder in 2022. The condition, referred to as SPS, causes muscle stiffness in the torso and can later cause rigidity and painful spasms.
In a rare TV interview with NBC, the “My Heart Will Go On” star said she tried to hide her symptoms five years after they first appeared while her husband and manager Rene Angelil was diagnosed with cancer for a second time.
“I had to hide,” she said. “I had to try to be a hero. I became a nurse. I became his supporter. I had to protect my kids. Practise my passion. Feeling my body leaving me. Holding on to my own dreams. But do I have dreams, what is going on, I can’t sing.”
Angelil died in 2016, aged 59. Two days later, Dion’s older brother Daniel also died of cancer.
Dion said it was around this time that her symptoms started to get worse, and she began visiting a doctor in the hope that he would be able to diagnose her.
By this point, she was back performing at Caesars Palace in Las Vegas and had begun experiencing blackouts.
“I would lose it for two hours without knowing,” she said. “Then you have a hard time to walk and you blank for two hours.”
She started taking high doses of diazepam, also known as Valium, in an attempt to control her symptoms: “I didn’t want to stop performing,” she said. “I would take, for example before a performance, [Valium, but] just walking to my dressing room to backstage it was gone already.”
“[That amount] of Valium can kill you,” she acknowledged NBC host Hoda Kotb, who pointed out how much she was taking in a day. “I did not know honestly that it could kill me... you can stop breathing.
“And at one point, the thing is that my body got used to it... and I needed that, it was relaxing my hold body for what, for two weeks, for a month, OK the show must go on. Here we go, I’m fine.
“But you get used to it, it doesn’t work anymore.”
In a preview clip of the interview this week, Dion admitted that she “did not take the time” to rest or try to work out what was happening to her.
“I could not do this anymore… we did not know what was going on,” she said “I should have stopped, take the time to figure it out… my husband as well was fighting for his own life. I had to raise my kids.
“I had to hide. I had to try to be a hero. Feeling my body leaving me, holding onto my own dreams. And the lying for me was – the burden was like too much.”
Dion told NBC that before she revealed her diagnosis, she felt as though she was “lying to the people who got me where I am today,” adding, “I could not do it anymore.”
The singer is also the subject of a new documentary, I Am: Celine Dion, from Oscar-nominated director Irene Taylor. Billed as “a love letter to her fans”, Dion’s documentary will highlight “the music that has guided her life while also showcasing the resilience of the human spirit”.
