Sleeping eight hours sounds good.
On paper.
Susan Popfinger knows the theory. She gets her nine. Maybe even a little more. But wake up anyway leaves her feeling like she’s been dragged through gravel.
“I can sleep well for nine hours,” she says, “and it still takes every fiber of myBeing to just do my normal activities.”
Her tank is on E.
Before she even gets to lunch.
It isn’t just regular tiredness. You know the kind? The kind that resolves itself if you find a comfortable couch for twenty minutes. No. This is deeper. It’s unpredictable. For Susan—a retired nurse from Long Island who spent thirty years holding space for other people’s crises—this fatigue hits hard and lingers. Sometimes once a week. Sometimes she goes three days clean.
Then it’s there again. Usually for a full day.
This isn’t burnout.
It’s a symptom of Primary Biliary Cholangitis (PBC).
A rare autoimmune disease. It causes chronic inflammation. Then irreversible scarring in the liver. Most often it hits women between 30 and 6.
Here is the tricky part.
The symptoms hide.
Susan felt fine when she was diagnosed. Fine, really. She was just there for routine blood work. The doctor looked at the numbers. Four or five elevated liver enzymes. That triggered a cascade. More tests. Scans. MRIs. A liver biopsy.
Early-stage PBC. That was the label.
It wasn’t until two years later that the real cost showed up.
She called it “debilitating fatigue.”
It didn’t just hurt. It disrupted her rhythm. It started dictating her days.
Living Anyway
So she plays pickleball.
If there’s a game on her calendar, she shows up. Even on the days when her body feels like lead.
Why? Because distraction matters. Activity takes the mind off the disease. Interacting with people helps, both mentally and physically. She lives in a 55-plus community, so she has plenty of chances to stay involved.
But she knows the limit. She respects it.
“It doesn’t matter how much sleep I have—it’s how much sleep I need.”
This distinction is hard for outsiders to grasp.
Fatigue is invisible. It gets dismissed. “Just get more rest,” they say. But you can’t outrun an autoimmune disorder with better sleep hygiene.
So she draws lines.
Unapologetic ones.
If a friend calls at 9 PM while she’s already in bed, the phone doesn’t ring. She tells them later. Not as an excuse, but as a fact. She needed rest. Because of the condition.
There’s a fear underlining it all, too. Quiet, but there.
Liver failure.
It’s the endpoint. Once you go there, you don’t come back without a transplant—or death. Susan wants to live. She has a husband, three sons, three grandchildren. Her life is full. Really full. And that fullness is the motivation to keep showing up to the pickleball court even when every cell screams no.
Speak Up or Fade Out
Susan’s main advice?
Take control.
Nobody else will.
She has met patients who suffer daily. Itching. Exhaustion. They keep quiet. They accept the status quo after their blood work is reviewed. They don’t ask the hard questions. They don’t advocate for care that goes beyond the basics.
Don’t do that.
You have to be involved in your own prognosis.
It starts with simple communication. Doctors are busy. Hard to reach. Susan solved this by establishing a rule. She asked how she could get through to him. The result? An email chain. A response within 24 hours guaranteed.
You have to follow up.
Insist on a connection that works for you.
She tells new patients:
“Don’t panic.”
Easy to say, right? Harder to do. But she believes if you don’t dwell on the worry, if you just put your best foot forward, you might actually enjoy the day.
The liver heals slowly.
Or it doesn’t.
Susan keeps moving anyway.
Pickleball tomorrow. Maybe she’ll make it. Maybe she won’t.
