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"We look fine. But inside, that isn’t necessarily how we’re feeling."
These are the words of Suzanne who was diagnosed with primary biliary cholangitis (PBC), a rare, chronic liver disease, twelve years ago following months of unexplained exhaustion.
For Suzanne and many like her, the invisible symptoms of PBC are often the hardest to navigate. From severe chronic fatigue to relentless itching (pruritus), there is a quiet loneliness in looking well on the outside while feeling anything but.
For many people living with PBC, it’s a challenge to find the words to describe what they are going through. That is why Gilead created Finding the Words, a poetry activation designed to bring those often-invisible experiences into view.
Launched as part of Gilead's All the Feelings with PBC™ campaign, Finding the Words invited people living with PBC to share their stories with poet Zoe Branch. Zoe had conversations with nine people living with PBC across Portugal, Norway, and the U.S. as they shared symptoms many had found difficult to explain, even to doctors and family members. Zoe then transformed their experiences into poems.
The poetry activation debuted at this year’s European Association of the Study of Liver Diseases (EASL) Congress, offering audiences a new way to understand and empathize with the disease that so often hides in plain sight.
Through poetry, Zoe drew out not just the clinical layer of Suzanne's diagnosis, but the emotional texture underneath it: the frustration of a body that won't cooperate. Suzanne describes her chronic fatigue as “carrying a massive weight around - it's like someone's just pushing down on your head and going, nope, sorry, can't move today.”
And then there are the small, hard-won joys of an ordinary good day — a walk by the sea, cooking dinner, or an evening with friends.
Widening the lens on PBC even further, the poem Zoe created of Suzanne’s experience is now part of SEEN, a cinematic film exploring the hidden realities of living with PBC. The film focuses on the hope and acceptance that lies beyond diagnosis through a powerful combination of poetry and visual storytelling.
By creating space for people living with PBC to express their experiences through art, whether through poetry or film, the All the Feelings campaign aims to deepen understanding of the condition beyond clinical symptoms alone.
Watch the SEEN film above to learn more and read the poem Zoe created on Suzanne’s experience below.
Suzanne’s Poem
My bones have grown heavy,
my body exhausted as if walking
through thick mud
as if suffocating. There are good days
and bad ones: fatigue like the king
and suddenly I understand
my daughter’s lifelong exhaustion.
I did not want to be sick —
had no time and so pushed it off
til the whole self revolted
and I had to accept it:
had to grieve the death
of the person I was from before
and welcome the next version.
Sometimes there are glimpses
of the once-me: such energy,
I complete all these tasks, I walk
by the water, I feast and oh how I laugh.
And sometimes the best I can ask for is
is to sit in the garden with eyes closed,
listening to the birds. I am learning
how to love this new world, which is
slower, is closer, is a shifting face
I choose to embrace. Eyes caught
on softness, full with hope
and with light: look at all I can hold,
even when tired.