Bellamy Young on Her Father’s Devastating Diagnosis: ‘It Was Heartbreaking'

These days, Bellamy Young, 56, is known for her incredible acting skills and notable roles on shows like Scandal and Brilliant Minds. But when she was a teenager, she was completely consumed by one thing: Caring for her father, who had overt hepatic encephalopathy (OHE), a decline in brain function caused by severe liver disease.

“My dad’s overt hepatic encephalopathy was born out of his drinking, and his initial diagnosis was cirrhosis,” Young, who has partnered with Salix Pharmaceuticals to help promote an FDA-approved medication to reduce the risk of OHE recurrence, tells Parade. “Drinking was always a part of my childhood. Once we got the cirrhosis diagnosis, we were very ashamed of it—we came home, closed the door and didn’t talk about it. And we had no idea that a disease that could affect his liver could eventually affect his brain, his proprioception and his personality.”

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Eventually, Young says, she and her mother started to see a “very different dad,” which is what tipped them off to something going on beyond cirrhosis. “Now I can look back and separate the man from the disease, but then I was young and I didn’t know what was happening,” she remembers.

Below, Young shares the details of the journey to her father’s OHE diagnosis, how she felt when they finally got answers and the truth about her caregiving journey.

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The Journey to a Diagnosis

When Young’s father’s personality started to shift, she remembers feeling embarrassed, as any teenager would. “He had become combative at work, he would forget to pick me up at school and his breath would smell different. He had that hand flap, which I now know is very textbook OHE—but as a teenager, I just thought, What is my dad doing?”

One night, her dad couldn’t find his way home from work, despite having worked in the same office location for decades. This is what finally got Young and her mother to seek help. “When we went back to the doctor, they said this is now overt hepatic encephalopathy. At that point, it was very, very progressed.”

The doctor explained that OHE can happen as liver disease progresses, and they just hadn’t known to pay attention to those little incremental changes along the way. “It’s not as scary as it sounds,” Young emphasizes. “‘Overt’ just means not hidden. ‘Hepatic’ refers to the liver. ‘Encephalopathy’ means it affects the brain.'”

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While Young emphasizes that she’s not a doctor or medical expert, she says spreading awareness is so important to her because symptoms do present similarly to other brain diseases, like Alzheimer’s.

“I’m so grateful to have partnered with Salix to start talking about these things, because this happens to so many people and no one’s talking about it,” she explains. “My mom and I had no idea that liver disease could be chronic and progressive—we didn’t know we could go into a different chapter of his disease process.”

If they had known that changes in how he used his body, changes in his memory, changes in his personality might actually be stemming from what was happening in his liver, she says, “we would have gotten him back to the doctor so much sooner.”

Young emphasizes that today, there are so many more treatment options than there used to be: “I talk about it, even though it makes me sad, so that nobody else feels alone—and so that anyone whose loved one is diagnosed with a chronic and progressive liver disease knows this is something that might happen, and can catch it early.”

Getting Answers

When Young finally got a definitive answer, a few months after she and her mom took him to the doctor because of his different behaviors, she was heartbroken. “I’m someone who very much believes knowledge is power, and usually once I know something, I can lock in and move forward,” she says. “But this was really heartbreaking, because it was so progressed by the time we got there.”

She also felt a lot of guilt. “I felt so guilty—guilty for not being a partner to him on this journey, for not having known to look out for something,” she says. “It’s hard to notice incremental changes in the people we love because we’re around them all the time. It was just the darkest day.”

Related: ‘I’m a Hepatologist—This Is the One Thing I Tell Every Patient With Fatty Liver Disease To Do Before Anything Else’

Stepping Into a Caregiving Role

Young shares that because she became her father’s caregiver as a teenager, she was her “worst human self.” “I wasn’t happy to do it. I was really miserable,” she admits. “I didn’t have people over. There was a hospital bed in the living room. As a teenager, that’s so embarrassing.”

She says her mom was the “responsible one,” doling out medicine and making sure her dad got to all of his appointments. “I was the harder edge of caretaking. And the crux of it is the same crux so many people face: the resentment. That’s an embarrassing thing to admit, but the resentment of wanting to live your life too,” Young says. “A sickness takes precedent and love wins out, and I wouldn’t give anything for the time I did have with my dad. But it took me years to recover from that [role].”

Her experience as a caregiver is another reason why Young has so much gratitude for her partnership with Salix, which also provides caregiving resources. “I don’t want anyone else to feel this way; I don’t want them to walk the same path. I want everybody to know they’re not alone, that there’s so much information and so many treatment options now, to find their community, to always check in with themselves and rely on people. People want to show up for you more than you realize.”

Why Her Role on Brilliant Minds ‘Hits Different’

Young recently played Dr. Amelia Frederick, the clinical director of a long-term mental healthcare facility on the NBC medical drama Brilliant Minds, which she says “hits different” given what she went through with her dad.

“I’ve been a huge fan of Oliver Sacks my whole life, so it was incredible to get the chance to work on a show built around his character. But what meant the most to me—especially through the lens of everything I went through with my dad—is that Oliver Sacks never gave up on anybody,” she says. “He was always interested in the story. He saw the person, not the disease, and treated each patient with respect and utter attention. I think if we all walk through life with utter attention for whoever we’re with, only love can come from that. Getting to do that series really meant a lot to me.”

And in case you’re wondering, yes—she is still in touch with the Scandal cast. “I’ll be with them tonight!” she says. “We have a Scandal text thread going every single day—it’s always happening. George [Newbern] and Tony [Goldwyn] were just together in London; Kerry [Washington] will be here this summer. It really has continued to be a family. We haven’t managed to get absolutely everyone together since Cornelius [Smith]’s wedding, but there are always little pockets of us gathering somewhere. Shonda [Rhimes] kindly invites us to the US Open every year, so that’s a tentpole on the Scandal family calendar.”

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