Bernie Williams has had many important roles, from New York Yankees legend to musician. But the 57-year-old also quietly served as a caregiver for his father, who had idiopathic pulmonary fibrosis, a form of interstitial lung disease.
Williams’ father, Bernabé Williams Sr., died from his condition in 2001, and inspired his son to become an advocate for awareness of interstitial lung disease. Williams discussed his caregiving journey and what he learned from it during a Men’s Health Lab panel called Beyond the Scars: Navigating Life with Interstitial Lung Disease.
The panel, which was hosted by MH Executive Editor Ben Court, explored the future of pulmonary health and idiopathic pulmonary fibrosis, which is the most common form of interstitial lung disease. The panel also featured rheumatologist Kostas Botsoglou, MD, along with Tom, a patient living with interstitial lung disease.
Williams said that his father’s illness “was very devastating for our family,” but it also inspired his future health and advocacy work. Here’s why.
Interstitial lung disease can take years to diagnose.
Interstitial lung disease is a group of more than 200 conditions that cause inflammation and scarring, or fibrosis, in the lungs, Botsoglou explained. “It’s estimated that ILD affects roughly 200,000 Americans, and I suspect that number’s higher just because of lack of recognition,” Botsoglou said.
The condition, which impacts men more than women, usually has a diagnostic delay. “The data suggests that from onset of symptoms to diagnosis, could be up to two years,” Botsoglou said. “The longer the delay, the worse the outcomes, including morbidity and death.”
Early symptoms may just be a cough.
In 2016, Tom came down with a recurring cough. “I began to have a problem with colds in the wintertime,” he said. “I would have one cold, get over it. Have another cold. Get over it. Have another cold…And then I had fits of dry cough.”
Tom said he finally saw a doctor on his wife’s advice. Tom’s usual doctor wasn’t in the day of his appointment, so he saw one of his doctor’s colleagues, who had experience in pulmonology. That doctor recommended that Tom get an X-ray. A few days after the scan, Tom received an email summarizing his findings. “At the bottom of that email, it said, ‘indications of ILD, probable IPF.’” Tom said.
Tom and his wife didn’t know what that meant, so they searched online. “It was mostly scary stuff. So we spent a very fitful weekend, praying and wondering what was going to happen next,” he said. But Tom said he didn’t get an official diagnosis until two years later, after he sought a second opinion.
Williams’ ‘superhero’ father had a similar experience.
Williams shared that his always thought of his dad as a superhero. “He was the guy that taught me how to play baseball, he taught me how to play the guitar, he was outgoing, very athletic, and he was always around the house working on things, fixing cars,” Williams said. “We saw him as an indestructible force of nature.”
But Williams’ father started to experience a series of colds, followed by a dry cough that never went away. “We were just coming and going from doctor to doctor,” Williams said. Ultimately, it took five years for his father to get a proper diagnosis.
“We really thought that there was going to be something that we could do,” Williams said. “Especially with the nature of fighting my dad had. We eventually found out that there was no cure for it… . It was devastating.”
Williams’ father was diagnosed at the height of his career.
“We were in that great run that we had in the 90s, winning all these championships,” Williams said. “But I still have this thing in the back of my mind.”
Williams said that his mom and brother took the “brunt” of care for his father, who was in Puerto Rico. “It was definitely a process that they had to go through,” he said. “It was devastating to see this guy became a ghost of what he was and just slowly deteriorate to the point that he was bedridden at the end, and knowing that there was not a lot of things that we could do for him.”
Self-advocacy is crucial, experts stress.
Interstitial lung disease can be progressive and, as it progresses, it leads to irreversible scarring, Botsoglou said.
“Being an advocate for yourself is important,” he said. “There’s a two-year delay [in diagnosis], and we know that with just one year in delay in diagnosis, the risk of mortality increases by twofold.” Diagnosis is important, as there are drugs that help slow progression of the disease.
Williams is still inspired by his father’s illness.
Williams said his father’s journey had a “profound influence” on how he approaches his own health. “To see him go through this process, it’s taught me a lot about how precious life is, how fragile it could be, how to take every measure that I could to take care of myself,” he said. “My dad was one of those guys, kind of old school, that didn’t want to go to the doctors at all.…By the time that he was actually diagnosed, he could not do much.”
Williams now urges other people to pay close attention to their health. “If you feel something that is off, just don’t take any answers, just keep fighting, keep looking for the answers that you need to take care of yourself,” Williams said.
Williams said his experience with his father’s illness and his advocacy journey has made him think about his own life. “I started thinking how much different I would approach my life if I knew…how many days I had left,” he said. “Being aware of that is not necessarily a bad thing. …It gives you this motivation to live life to the fullest.”
The 2nd annual Men’s Health Lab was hosted by Hearst Magazines in partnership with NYU Langone Health and presented by Boehringer Ingelheim and Gilead, with special thanks to Ensure Max Protein.
Korin Miller is a freelance writer specializing in general wellness, sexual health and relationships, and lifestyle trends, with work appearing in Men’s Health, Women’s Health, Self, Glamour, and more. She has a master’s degree from American University, lives by the beach, and hopes to own a teacup pig and taco truck one day.
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