Living Loud With an Invisible Illness Like PBC: Never a Dull Moment

Living with primary biliary cholangitis (PBC) can feel like having a very dramatic roommate inside my body.

I can look fine – while my liver and immune system are acting like they got possessed by a ghost from a reality show. One minute, I am a normal woman with errands, lip gloss, opinions, and a deep need to know why every household item now needs a charger. The next minute, my body makes choices no one approved.

PBC is strange because so much of it happens under the surface. People may not see the fatigue, the itching, the brain fog, the labs, or the mental load of a disease that does not always announce itself loudly. I did not ask to become fluent in liver numbers, medical portals, or words nobody wants to meet in real life or in a crossword puzzle.

Looking fine does not mean I feel fine with PBC

The hardest part of living with an invisible illness is the word invisible. People see hair done, makeup on, or a joke posted online, and they may assume that means I am doing well.

PBC does not always look the way people expect illness to look. I may not have a fever or a sore throat. In my experience, the symptoms can feel random and hard to explain without sounding like I am reading from a strange medical menu.

Fatigue is one of the hardest symptoms to describe. It is not the same as being tired after a long day. For me, it can feel like my body unplugged itself from the wall while I was still trying to function like a fully-charged person.

During one Costco trip, I almost cried from sheer excitement. I walked the aisles, looked at giant muffins, and did not have to stop over and over to recover. That may sound small, yet to me it felt huge.

My illness doesn't follow a script

People love a comeback story. They love the before and after, the movie scene where the music swells and life becomes inspiring content by Tuesday.

Chronic illness does not always give me that montage. Sometimes it gives me fatigue so rude it should be blocked. Sometimes PBC gives me itching that goes past a simple scratch. It reaches down to the bones.

The tops of my hands, the tops of my feet, my torso, and a few random spots may all chime in for fun. Add brain fog, unpredictable labs, and a body that buffers like hotel Wi-Fi, and the healing montage feels hot off a C-rated film.

I grieve what I could do before PBC

The mental part can be just as heavy as the physical part. I grieve old versions of myself while trying to love the version who is still here. I miss the woman who could make plans without checking symptoms first.

I miss being spontaneous. I miss being believed without feeling like I have to perform my pain like a courtroom exhibit. Invisible illness can make me feel like I have to prove I am sick enough for care, while staying pleasant enough that nobody gets uncomfortable.

Be inspiring, yet not too needy. Be honest, yet not too dark. Be strong, yet easy to be around. Flawless, hydrated, calm, and ready for brunch.

Absolutely not.

Strength can be silent

Living with PBC has changed how I see strength. Strength is not always pushing through. Sometimes it is resting, asking for help, showing up to the appointment, or admitting that the day is harder than it looks.

PBC and autoimmune hepatitis were my first diagnoses. Years later, they brought friends, the way high school juniors show up at a football game. My health story has extra plot twists, and PBC is the one that first opened my eyes to how much life could change.

Invisible does not mean my illness is imaginary

I wish more people understood that invisible does not mean imaginary. A person can be beautiful and sick, funny and exhausted, ambitious and dealing with a body that does not always cooperate.

I am sharing my own experience, not medical advice. Each person's body, care plan, and health choices belong between them and their healthcare team.

I am still here. Still creating, still laughing, still learning how to live inside a body that keeps changing the terms and conditions. This is not the life I expected. It is still my life.