Justin Bieber is one of many celebrities who share personal health issues

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Last week Justin Bieber posted a video on Instagram in which he not only shares his diagnosis of Ramsay Hunt Syndrome, which has left half his face paralyzed, but also shows it.

“As you can see, that eye doesn’t blink. I can’t smile on this side of my face. That nostril isn’t going to move,” the weary-looking Canadian singer, in a beanie and flannel, said in the video.

Just days after several of Bieber’s concerts were cancelled, the news brought a wealth of congratulations for 28-year-old Bieber, who was currently touring for his fifth and sixth studio albums, Changes (2020) and Justice. (2021).

What is Ramsay Hunt Syndrome, the condition affecting Justin Bieber?

Some might say that making your personal health issues visible to 241 million followers is a bold move — especially when your professional career depends to some degree on your physical appearance. But Bieber is just one of several people in the spotlight who have been open about their health lately.

Such openness is not always encouraged. The 49-year-old actress speaks in Selma Blair’s memoir Mean Baby: A Memoir of Growing Up, which was released last month describes the diagnosis of multiple sclerosis (MS). “My doctors urged me not to go public,” she wrote. They said to her, “’You’re an actress; your body, your voice, that’s all you have.’ Blair went ahead anyway and posted about it on Instagram in 2018.

These disclosures are made as public figures have direct access to fans through social media posts, and their intimate live streams and stories can go directly to their followers. While celebrities used to choose to keep their medical issues outside of public scrutiny, many now seem to believe that the benefits — raising awareness of disease and controlling narratives about their own health — outweigh the costs.

These online spaces allow singer Halsey, 27, to post a video of herself wearing a heart monitor and speaking to millions of followers about postpartum health issues and endometriosis with the ease of texting a friend. Comedian Lilly Singh shares that her “ovaries have the audacity to rip out of her hospital bed.” And Hailey Bieber, Bieber’s wife, can tell her fans she was rushed to the ER with a blood clot in March — while proving firsthand that she’s fine.

As for Justin Bieber’s condition, “If he covered it up it would raise more questions about what’s wrong with him. Not doing something is a greater risk than actually doing something,” says Christine Kowalczyk, an associate professor who studies celebrity and branding at East Carolina University. “When people hear he’s canceling shows, he wants to be upfront and honest about the reasons why so people will keep coming and seeing him.”

Kowalczyk says she’s seen a shift toward greater transparency in the entertainment industry over the past decade. She references Angelina Jolie’s 2013 New York Times Comment on breast cancer for example. In the essay, Jolie, who suffered from facial paralysis similar to Bieber’s in 2016, announced her decision to have a preventive double mastectomy after learning she had the gene that puts her at risk of developing breast and ovarian cancer. “I’m writing about this now because I hope other women can benefit from my experience,” she said.

Studies — including one looking specifically at responding to news about Jolie’s preventative treatment — have shown that these disclosures can lead to more information-seeking and disease screening among the public.

“A lot of celebrities will have access to doctors that the general public might not have, and so there might be someone being screened to identify something they might not have known about,” says Kowalczyk. “It’s good for education and awareness.”

Speaking openly about an illness can also be a powerful act of advocacy. Halsey spoke for endometriosis research at the 2018 Blossom Ball. Selena Gomez helped raise nearly half a million dollars for lupus research she has herself. And the wider awareness of Jada Pinkett Smith’s alopecia, an autoimmune condition that causes hair loss, has prompted numerous calls to end the stigma surrounding the condition. Representative Ayanna Pressley (D-Mass.) called himself a “proud alopecia”.

Chris Smit, co-founder and co-director of DisArt, a production company focused on disability culture, sees Justin Bieber’s announcement of his temporary disability as an opportunity to educate the public. “It shows that we don’t have to be afraid of disabilities, that we don’t have to pretend that disabilities don’t exist,” he says.

Much of the mainstream discourse about disability becomes either what Smit calls “overcoming narratives” or a kind of spectacle. “I don’t think we put enough energy into thinking about the actual lived experience of disability,” he says.

And if we did, he suggests, maybe the response to Bieber’s experience would be a little different. Smit, who is disabled, noticed some comments about how brave Bieber is for posting about his condition on social media. “In my culture, that’s not bravery,” he says. “It’s easy to live.”

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