November is National Family Caregiver Month.
Award-winning actress Bellamy Young is known for playing strong characters on television shows like The Other Black Girl and Scandal (Hello, Madam President!).
These days, she also uses the strength of her voice and her personal experience to raise awareness of a serious condition called hepatic encephalopathy (HE), which can cause brain damage in people with liver problems. When she was a teenager, Young’s father was diagnosed with open HE.
“My father’s journey with overt hepatic encephalopathy began with a diagnosis of liver cirrhosis. This diagnosis arose from the fact that he was a heavy drinker,” she said. “There was a lot of shame and stigma associated with the diagnosis – our family kind of took it lightly, went home and silently agreed never to talk about it again.”
HE occurs when your liver is unable to filter toxins from your blood. The toxins then accumulate and damage the brain, which can lead to memory loss, slurred speech, coma and even death.
Young and her family had no idea that her father’s liver disease could cause HE and affect his brain. “We weren’t told much about what we could do about it, and we definitely weren’t told what we might face or what we should be aware of,” Young said. Symptoms of HE can include involuntary movements, loss of balance, a musty smell and dramatic personality changes – all things that happened to Young’s father. “When your brain is clouded by the toxins that build up in your bloodstream and body, you turn into a different person,” she said.
Anyone with liver disease can develop HE, but you can prevent it from causing permanent brain damage if you catch it early — something Young wished she had known back then and why HE awareness is so important to her today to sharpen. We spoke to Young about her experiences and how she uses social media to give healthcare nurses a voice.
This interview has been lightly edited for clarity and length.
Healthy women: Looking back, what signs of hepatic encephalopathy (HE) did you notice in your father?
Bellamy Young: We lived with this diagnosis [cirrhosis of the liver] We thought it was an end point, but my father was constantly changing. I was a teenager and I was my worst self and I just thought he had been drinking during the day so that’s why he didn’t pick me up from school or he started smelling funny. But then one night he couldn’t find his way home from work – the building where he had worked for 23 years – and that sent us back to the doctor because we thought something else must be going on.
That’s when they said it was obvious hepatic encephalopathy and progression of his liver disease. My mom and I were like, “What?” Because we didn’t know this was even possible. We felt terrible, like we could have helped him – we could have gotten him back sooner if we had known we were noticing changes. The options were very limited back then. We didn’t have much time with him after the diagnosis.
Healthy women: What inspired you to speak openly about your experiences today and raise awareness about HE?
Bellamy Young: To find out that so much has changed. I had no idea because that’s not something I talked about. I had no idea that treatment options had evolved and that communities were emerging – and when I found out, I was honored to be part of the discussion.
Today I’m so grateful to be able to talk about this because I never want anyone else to feel ashamed or alone and there’s so much more to know and there’s so much information and so many more options. And I’ve found that when we talk about it, people are so relieved to have these conversations because they’ve been feeling so isolated and so scared and because we’re coming together as a community and helping each other – first of all – knowing that we’re not alone Then it was a great blessing to share our knowledge and develop strategies on how to talk to doctors and how to care for our loved ones.
Healthy women: Tell us a little about the conversations with HE caregivers that you will share on your Instagram.
Bellamy Young: It’s simply about sharing stories and being seen and heard. The act of learning and coming together was so powerful because so often, especially when you’re trying to take care of someone you love, you forget to take care of yourself too, and the well runs dry and there’s nothing left give gives. And so we remember that our greatest place of strength is a full well – or as close as we can get to such a full well – and to ask for help when we need it and to give help when we have the strength to do so have to be asked without waiting.
Healthy women: What advice do you have or what have you learned that you would like to share with college counselors?
Bellamy Young: A good thing is to make sure you know what to look for. When you know someone you love has been diagnosed with liver disease, just know that it’s a journey – you’re not there yet. Find out what other symptoms you might experience, what progression might look like, and what you might face. HE may not occur, but if you just know what to look for, you can spot changes as soon as they occur.
And then I really think the other pillar is community because you can’t do it alone. We always think that we have to do it alone, especially when it’s our parents, our spouse or our child – we feel such a responsibility that belongs only to us, but it takes a village to keep someone going and it also needs help keeping one’s engine full of fuel. I’ve had this conversation with myself many times – I have to think about self-care like it’s not icing on the cake – it’s an absolute necessity.
You can follow Bellamy Young @bellamyyoung.
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