What 5 years of listening taught me about a silent disease
Data tells a deeply human story about life with steatotic liver disease
Written by |
Tiffany Mensah is Manager of Patient Engagement and Digital Strategy at the Fatty Liver Foundation. (Courtesy of Tiffany Mensah)
When people hear the word “silent” attached to a disease, they often picture someone going about their life completely unaware that something is wrong, with no pain or disruption to their daily routines. For years, that’s been one of the most commonly repeated characterizations of steatotic liver disease. Yet every year, for the past five years, our survey respondents have proven that narrative wrong.
I’m Tiffany Mensah, and I manage the State of Steatotic Liver Care in America survey on behalf of the Fatty Liver Foundation. It’s one of the parts of my work I find most meaningful, because what this project has taught me, more than anything else, is that the data doesn’t only tell you what’s happening, but what people are actually carrying.
Year after year, respondents report symptoms that don’t make it onto a typical silent disease checklist: persistent tiredness that makes it hard to get through the day, right upper side pain that they’ve been told is probably nothing, disrupted sleep, bloating, constipation, nausea, and itching. These reports show up with striking frequency in our surveys. Yet, so many tell us they’ve been dismissed, had symptoms minimized, or that they didn’t even connect these experiences to their liver at all because they were told this disease doesn’t feel like anything.
In last year’s survey, one respondent wrote something I haven’t been able to stop thinking about. She said, “In October 2024, I lost my mother to liver cancer, and I am now terrified my outcome will be the same. She was 82, I’m only 62, and haven’t even begun to experience retired life with my husband. I have dreams and plans for after retirement, and I am afraid I won’t achieve them.”
Often, I come back to that quote. There’s something in it that feels universally true: the understanding that you can do everything right — plan carefully, save diligently, and build a future you’re excited about — but without your health, none of it unfolds the way you imagined. She’s not just describing the fear of illness, but the very human fear of losing time and a vision that may never come to fruition. This is what our community is navigating every single day, not just abnormal lab values or imaging tests. But add in loneliness, anxiety, grief, poor sleep, and the emotional weight of an uncertain future.
The State of Steatotic Liver Care in America survey exists because we believe patients deserve to be seen as whole people, not just a diagnosis. The insights gathered here reach researchers, clinicians, and advocates who are working to improve care. Each response adds texture and truth to a picture that was historically too flat, too clinical, too silent. If you are living with any form of steatotic liver disease, your story is part of this.
The 2026 survey is now open. I hope you’ll take a few minutes to participate, not just for the data but because the woman who wrote that response didn’t want her fear to be invisible, and neither should yours.
This article was provided by our partner, Fatty Liver Foundation. It has been reviewed by Bionews for accuracy and relevance. The views and opinions expressed are those of the author and do not necessarily reflect the views of Bionews or Liver Disease News.
