We’re in an age of colossal oversharing on the internet, which often includes intimate details of our personal lives, such as our experiences with disability. It’s not just us regular folk; in recent years, many celebrities diagnosed later in life have used social media to share the learning curve of living with their new impairment/s.
Celine Dion is the latest high-profile star to reveal news of a medical diagnosis, as she announced to her fans last week that she had to postpone her upcoming tour due to finding out she has Stiff Person Syndrome (SPS).
“As you know, I’ve always been an open book,” she said in an emotional face-to-camera video uploaded to her social media pages last Thursday. “I wasn’t ready to say anything before, but I’m ready now. 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.”
She went on to explain that due to the muscle spasms caused by SPS, she is sometimes unable to walk or sing in the ways she is used to, so she would need to reschedule her 2023 Courage tour. “I have no choice but to concentrate on my health at this moment,” she said, “And I have hope that I’m on the road to recovery.”
“You look beautiful. When I say I’m happy to be here, I really mean it from my heart.”
SPS only affects around one in a million people globally, and whilst Celine is the first famous person to share news of this particular impairment, she is one of a growing number of celebrities openly talking about their journey with disability, chronic illness and/or mental health issues in recent years.
Actors Selma Blair and Christina Applegate were diagnosed with Multiple Sclerosis (MS) in 2018 and 2021, respectively, and have spoken very publicly about it since. Selma details how she came to terms with her body not working as it once did in her memoir Mean Baby. Christina recently appeared on Kelly Clarkson’s US talk show and shared how she managed her diagnosis whilse working on the Netflix comedy Dead To Me.
A host of other stars also talk frankly about their impairments, such as Jameela Jamil and Lena Dunham, who have both publicly discussed their Ehlers-Danlos Syndrome (EDS), Selena Gomez, who shared about living with lupus in her documentary My Mind & Me, and Yolanda Hadid who has described her experiences of Lyme disease in multiple interviews.
There can be positive and negative consequences of sharing diagnoses so publicly. There is an educational, awareness-raising aspect of highlighting different disabilities, how they impact people, and how literally anyone can be affected by them. For example, the impairments mentioned in this article are still very unknown to the majority of people who aren’t directly affected by them.
Despite celebrities like Selena Gomez living with the chronic disease, lupus is so rarely spoken about.
However, it’s also important to realise that people can be affected very differently, even within the same diagnosis. “As someone who is actually not as impacted by lupus as some people can be, I think it’s important to reflect that everyone’s experiences are very different and individual. And sometimes if you’ve maybe just got a handful of celebrities talking about how something impacts them – you’re going to get quite a skewed viewpoint,” shares Katie.
It can be very validating for others who have the same impairment, particularly if recently diagnosed, to see celebrities openly sharing. Rebecca Boot, who has EDS, agrees: “Sometimes celebrities sharing their coming to terms with a disabled identity can help others accept their own if it's done in a way that reinforces the fact that disability is not a tragedy and you can live a good life whilst disabled.”
“Because wider society views being disabled as tragic, many people who acquire their disability go through a grieving period, maybe even shock or denial.”
Selma Blair is a shining example of this: she has shared about the hard times frankly but balances that with regular updates of her living her joyful disabled life. She also works with her disabled community, for example, with adaptive beauty line Guide Beauty.
The experiences shared aren’t always as positive as Selma’s, though. It can sometimes be tough watching public figures go through the journey of coming to terms with their impairment in a very public way. Because wider society views being disabled as tragic, many people who acquire their disability go through a grieving period, maybe even shock or denial. Witnessing that unfolding can be triggering for other disabled people and can reinforce the idea that disability is devastating.
I was 37 when I was finally diagnosed with ADHD. What took so long?
But something I feel very encouraged by as a disabled person is the shame that is gradually collectively being shed through celebrities who are able to own their disabled identity. In Christina Applegate’s interview with Kelly Clarkson, she said quite firmly, twice, “I am a disabled person,” and that lands so powerfully, especially coming from someone who has only recently discovered this part of their identity.
I hope that in Christina Applegate, Celine Dion, and others' sharing, we as a society can feel less scared of disability and less like the world is going to end after diagnosis.
More importantly, I hope disabled people in need of community feel less alone. While celebrities have access to many more healthcare opportunities and support than regular folk, knowing someone else is going through similar things can be really affirming.
At the end of the day, we’re all human, and nobody can really escape disability, not even those who have fame and money. I’m looking forward to hopefully seeing less disabled shame and more disabled joy from awesome disabled celebrities in 2023.
“I don’t just want to be seen as Ellie Simmonds: the dwarf”.
