After a full night’s sleep, Susan Popfinger often feels drained. “I can sleep well for nine hours, and it still takes every fiber of my being to just do my normal activities. It’s like my tank is running on empty before I’m even halfway through the day,” she says.
It’s not the kind of tiredness that can be solved with a nap, either. For Susan, a retired registered nurse who spent more than 30 years caring for others, the exhaustion can come on unpredictably and linger for hours at a time. “It might happen once a week, or I might go three days and not feel it,” says the Long Island, New York native. “Then all of a sudden, it happens. Usually, I’ll experience the fatigue for 24 hours.”
That distinction between simply feeling tired and experiencing a deeper, more persistent fatigue is a hallmark of primary biliary cholangitis (PBC), a rare autoimmune disease that causes chronic inflammation and irreversible scarring of the liver. It predominantly affects women between the ages of 30 and 60.
One of the challenges with PBC is that symptoms don’t always appear right away. Many people feel fine at the time of diagnosis, as Susan did. “I was just having some routine blood work done, and it showed about four or five elevated liver enzymes,” she says. “Many tests, scans, MRIs, and a liver biopsy later, I was diagnosed with early stage PBC.”
As the disease progresses, symptoms can begin to take hold. About two years after her diagnosis, Susan began experiencing what she describes as a “debilitating fatigue” that disrupted her routine and eventually shaped how she lives day to day.
Staying Positive And Determined
Rather than give in to fatigue, Susan has chosen to power through while keeping her life as normal as possible. “If I have things scheduled, I try my best to do them,” she says. “I live in a 55 and older community, where I’m involved in a lot of activities—I even play pickleball when I can. If I’m supposed to play a game on a day I feel fatigued, I still try and play if possible. Activities take my mind off of PBC. I also think that interacting with people helps me both mentally and physically.”
This isn’t to say that PBC hasn’t had a major impact on her life. Susan lives with the uncertainty of what tomorrow may bring and knows that her fatigue can be difficult for those around her to understand. Because it isn’t always visible, it can sometimes be overlooked or downplayed by others. She deals with this by knowing her limits unapologetically. “It doesn’t matter how much sleep I have—it’s how much sleep I need,” Susan says. “If a friend calls me at 9 PM and I’m in bed, I won’t answer the phone. I’ll just tell them later that I needed to rest because of my condition.”
Susan especially values time with her family. “My big concern is that I could go into liver failure,” she says. “Once that happens, there’s no stopping it. You might be able to have a liver transplant, or you might die. I want to live. I have a wonderful husband, three sons, three grandkids, and siblings. I have a very full life.”
Remaining Proactive, Always
Above all, Susan is a strong advocate for her health, and she urges others with PBC to take control of their prognosis as much as possible. “You have to advocate for yourself because, honestly, no one else is going to do it. I’ve met other people who have been living with daily symptoms of PBC, like exhaustion or itching, and haven’t yet had the important conversation with their healthcare provider advocating for their PBC care needs beyond their bloodwork. You have to be involved.”
Sometimes, simple communication strategies can make all the difference. “It can be very hard to get in touch with your doctor,” Susan says. “What I did at the beginning was ask how I could reach him. We worked out that if I emailed him, I’d hear back within 24 hours. You have to follow up.”
Susan’s proactive, positive approach makes her an inspiration to other people living with chronic health conditions and to everyone she knows. She sums up her advice to anyone newly diagnosed with her typical strength and optimism: “Don’t panic,” she says. “Try not to dwell on worry, and just put your best foot forward.”
To learn more about PBC, visit RealPBCTalk.com.