What it’s like to grow up with a disease that’s kept secret: ‘I felt unclean’

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Every family has secrets. For Lindsay Ventura, her mother, and her sister, the secret was a disease. At first it was something they didn’t even know they had, but when they were eventually diagnosed, they decided to keep it to themselves for years out of fear they would be stigmatized for it.

The disease was hepatitis C.

In 1990, when Ventura was 3 and her older brother was 5, their father was diagnosed with pancreatic cancer. He was given six months to live. That set things into motion for Ventura’s mother. Despite being healthy and having no symptoms, Ventura’s mom — whose own mother had liver disease — started to worry about her health, knowing she would soon be her kids’ sole parent.

“She was 35 at that time,” says Ventura, whose father passed away in 1991. “The only reason this was on her radar was because [dad] was sick. She just wanted to know she would be around for my brother and I.”

Ventura’s mom went to her doctor to find out if she, too, had liver disease, like her own mother. A blood test revealed she had some form of hepatitis, which the doctor called “non-A/non-B hepatitis.” (The hepatitis C virus wasn’t identified until 1989, so it was still considered a new diagnosis then.)

Her mom eventually remarried and had two more children. A follow-up blood test in 1997 revealed a more accurate diagnosis: Ventura’s mom had hepatitis C. “Even still they knew little about it and said she’d likely die of old age before it was a concern,” notes Ventura. “She had no idea where it had come from. She worked as a physical therapist in burn units, administering wound care, and came in contact with patients’ bodily fluids, and she’s a baby boomer [baby boomers and veterans have higher rates of hepatitis C]. To this day, she doesn’t really know where it came from, but at the end of the day, it doesn’t really matter.”