Emma Heming Willis Says She’s ‘Holding Gratitude as Well as Grief’ in Touching Op-Ed on Bruce’s Dementia

Since Bruce Willis was diagnosed with frontotemporal dementia (FTD) in February 2023, his family has been open about sharing his health struggles. The disease, which can come with symptoms like personality changes, difficulty with language, and motor-related issues, forced Willis into retirement from his acting career and has led his family, including wife Emma Heming Willis and ex-wife Demi Moore, to become caregivers and advocates to raise awareness for the condition. In a new op-ed in Maria Shriver’s Sunday Paper, Heming Willis is now sharing what’s she’s learned from the experience in the hopes of helping others facing similar challenges.

In the op-ed, Heming Willis is candid about how she struggled “with whether and how to come forward with this difficult chapter in our story” following Willis’s diagnosis. But after they shared the news in a statement via the Association for Frontotemporal Degeneration, “I felt like I could breathe,” Heming Willis said. “Suddenly, I wasn’t alone anymore and I could seek the support Bruce, myself, and our family so desperately needed.”

The first lesson she learned after the diagnosis: that “there’s strength in community.” Heming Willis described how “devastating” it was to learn Willis had FTD, but that it “explained so much of what we’d been going through.” The diagnosis also enabled Heming Willis and her family (including daughters Mabel and Evelyn and Willis’s three daughters with Moore) to find a community they desperately needed. “You get to connect with people who understand your story immediately,” Heming Willis explained.

Heming Willis also explained how important awareness is when it comes to conditions like FTD, which is “the most common form of young-onset dementia” and yet remains a disease that’s not well-known, which makes getting a diagnosis “a long and lonely process.” FTD occurs when portions of the front and temporal lobes of the brain begin to shrink, and shares symptoms with conditions like Alzheimer’s and Parkinson’s, making diagnosis even more challenging.

It was “hard… to come forward” about Willis’ diagnosis, Heming Willis went on, but she knew it was necessary to raise awareness about the disease. “I’ve seen others raise awareness for other important causes and illnesses close to their hearts and the changes that have followed have been remarkable,” said Heming Willis, adding that her goal is to “see an end to FTD.”

On a personal level, Heming Willis said, “our journey has changed how I perceive the world.” She explained, “I’ve become more compassionate. I find that I’m able to hold more space for what others might be going through. I’m holding gratitude as well as grief.”

The rollercoaster of emotions is real, as Heming Willis admitted that she also “struggle[s] with guilt, knowing that I have resources that others don’t.” She shared, “When I’m able to get out for a hike to clear my head, it’s not lost on me that not all care partners can do that.” Even the amount of press attention on her family contributes to the guilt, as “there are many thousands of untold, unheard stories, each of them deserving of compassion and concern.”

And yet, Heming Willis knows that sharing her husband’s and her family’s struggles may help others “feel seen and understood.” She’s also found that, compared to after Willis was diagnosed, “I have so much more hope today… I understand this disease more now, and I’m now connected to an incredible community of support.” She described how she’s now found a new purpose, though “admittedly one I never would have gone looking for.” Even as she “grieve[s] this experience daily… I also know that it has made me stronger than I ever thought possible.”

Before you go, read about other celebs who have opened up about their rare or chronic illnesses: