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Emma Heming Willis wants to set the record straight on how misguided media coverage of neurocognitive diseases can affect families — including her own.
In a candid video posted on Instagram Sunday, Emma, 47, shared her response to being “clickbaited” by a headline about her family and her 68-year-old husband Bruce Willis’ health.
“The headline basically says there is no more joy in my husband. Now, I can just tell you, that is far from the truth,” Emma said as she began the video. “I need society – and whoever’s writing these stupid headlines – to stop scaring people. Stop scaring people to think that once they get a diagnosis of some kind of neurocognitive disease that that’s it. ‘It’s over. Let’s pack it up. We’re — Nothing else to see here. We’re done.’ No.”
She then said that her family’s experience been the “complete opposite of that” amid Bruce’s frontotemporal dementia (FTD) diagnosis.
“There is grief and sadness. There’s all of that. But you start a new chapter,” Emma said, adding that the new chapter is filled “with love, it’s filled with connection, it’s filled with joy, it’s filled with happiness.”
“That’s where we are. So stop with these stupid headlines. These stupid clickbaity things that freak people out. Stop doing that. There’s nothing to see here, okay?” she continued.
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In the caption, Emma reflected further on the inaccurate reporting she’d seen as she encouraged media outlets to be “mindful” of how stories about dementia are framed.
“My experience is that two things can be true and exist at the same time. Grief and deep love. Sadness and deep connection. Trauma and resilience. I had to get out of my own way to get here but once I arrived, life really started to come together with meaning and I had a true sense of purpose. There is so much beauty and soulfulness in this story,” she wrote.
“Here’s what I’ve come to understand is that we are being educated by the wrong people. People that have an opinion versus an experience. People that have not taken the time to properly educate themselves on any kind of neurocognitive disease. Why can I be so bold and say that? Because I see headline after headline and blurbs of misinformation,” Emma continued.
She added: “I’m not even talking about my family, I’m used to the craziness of these farfetched headlines and stories. I’m just talking about baseline dementia awareness and what’s being fed to the public. You wonder why anxiety and depression is up in our society. I honestly think part of it has to do with this kind of clickbait, how things are framed and pushed out to us and how we have a split second to take that information in. Man, it’ll do a number on my psyche.”
Emma’s candid comments on how media tends to view neurocognitive disorders — and how her husband of 16 years’ diagnosis has been discussed publicly — comes after she spoke with PEOPLE about the work she and her business partner and friend Helen Christoni do through their wellness brand, Make Time, which raises awareness of the importance of brain health, particularly for women. The pair were among those celebrated as PEOPLE’s Women Changing the World, which highlights women making a difference in their communities and beyond.
Through her work with Make Time, and as a caregiver to Bruce, Emma stresses the comfort one can find in a shared experience.
“I’ve been able to lean in on this new community I find myself in, so giving back to people who are on this journey as care partners has been super meaningful,” she shared. “Community is everything.”
