While she was at university, Taise was diagnosed with primary biliary cholangitis (PBC), which is an autoimmune liver condition that’s far more common in older adults. In this powerful personal story, she shares her journey from diagnosis and hospital stays to building resilience and becoming an advocate for young people living with PBC and other liver conditions. Thank you for sharing your story Taise.
I was 19 when I first found out I had primary biliary cholangitis (PBC) ; a diagnosis I’d never even heard of. It began by accident in spring 2021. I’d gone to a doctor about long-COVID symptoms and they ran a full autoimmune screen. The only thing that came back was a positive AMA autoantibody. From there I was referred to a hepatologist, but because PBC is very rare in someone my age and my bloods didn’t look too bad at the time, I spent the next year having routine monitoring while life carried on.
During that year I was also diagnosed with POTS, which shares symptoms (especially fatigue) so the signs of PBC weren’t obvious. In April 2022 my liver blood tests changed and I was referred to the liver unit in Belfast. They felt I met enough criteria for PBC and started me on ursodeoxycholic acid straight away. To be sure, my hepatologist organised a liver biopsy in July 2022; the biopsy confirmed PBC with evidence of fibrosis, and I continued treatment.
Since diagnosis I’ve had autoimmune blood tests, fibroscans, two biopsies, ongoing blood monitoring and trials of medications. I tried obeticholic acid but had to stop because it worsened itching. I also experienced a drug-induced liver injury from another medication which required hospital care ; a frightening episode that underlined how fragile and complicated treatment can be.
Being so young with a disease that most people associate with older adults has been one of the hardest parts. I was at university in England while my family home is in Northern Ireland, so I was under multiple medical teams and often felt lost between systems. Miscommunication (or no communication) between services meant I was regularly the one chasing results or asking for updates. There were times I felt gaslit or dismissed (as if my symptoms were exaggerations or just stress) and other times I received excellent care from nurses and doctors who listened.
Symptoms are more than a list: fatigue for me is a wave of exhaustion that sleep won’t fix. In my first year at university I struggled to pace myself; I missed the last term because there were days I couldn’t get out of bed and my family had to physically help me. Learning to pace (even working with a pacing coach) changed how I managed study and social life. It wasn’t the typical student experience, but I did still make friends and have good times, which I’m grateful for.
Itch has been another humiliating symptom. At my worst I was openly scratching in public and felt people staring or recoiling, assuming something contagious. I had to reassure strangers that it wasn’t scabies or chicken pox — and the stigma ran deeper: because I’m young, some people assumed my liver disease had something to do with alcohol.
Let me be clear: PBC is an autoimmune disease and has nothing to do with alcohol. Being wrongly judged like that added another layer of isolation.
I’m lucky to have an incredibly supportive mother who has fought for me when I didn’t have the strength to push. There have been times that persistence (from both of us) was the only thing that got me access to the tests or care I needed. Today my bloods are the best they’ve been in two years, and a year ago I was jaundiced; now there’s no trace of it. That progress means everything.
These last four years have been among the most challenging (and also some of the most formative) of my life. Living with chronic illness has forced me to value my energy, reassess friendships, and learn to celebrate the good days. I’m still processing everything, but I’ve grown more confident, more in touch with my body, and more certain of my own voice. I want to use that voice now.
I’ve just finished university, and I’m ready to get involved: joining online platforms, supporting peer groups, and raising awareness about PBC, especially among young people.
If you’re around my age and living with PBC, or if you felt judged or isolated when you were diagnosed, I’d love to connect. Finding others who understand has made a huge difference to me – it’s a reminder that this condition isn’t “all in your head,” and you’re not alone.
If my story helps even one person feel seen, less ashamed, or more likely to reach out, that would mean everything.
