The Stigma of Liver Disease

I do a lot of volunteer work with the American Liver Foundation. This frequently puts me in social settings at food & drink events where, upon hearing the name of the organization, I’m immediately confronted with the biggest stigma of Liver Disease. “Isn’t it a little odd to be talking about liver disease while holding a beer?”

I love these conversations, because the juxtaposition creates a teachable moment that is more likely than not to be remembered.

My response blows up their preconceptions. “Actually, there are over one-hundred types of liver disease that have nothing to do with alcohol. NASH is a serious progressive liver disease affecting over twenty million American’s alone”.

Liver Transplants by Disease, Stigma of Liver Disease
Until recently Hep C was the top indicator for liver transplants…this has changed dramatically due to the introduction of highly effective anti-virals over the last 10 years. Now NASH is slated to become the #1 cause for liver transplant.

Recently, I’ve heard from patients diagnosed with NASH who share heart-breaking stories about how their conditions are perceived among friends and family. All too frequently, they are being ostracized by loved ones, and berated for being alcohol abusers or drug users when they are not. Even when they aren’t lumped in with these vices, NASH itself is a disease rooted in metabolic syndrome and obesity, which come with their own stigmas.

One of the biggest challenges we face in raising awareness for NASH is this stigma of liver disease. I’ve even had to convince some of my Mom’s own friends and family that her disease was non-alcholic in nature.

In short, liver disease is all too frequently assumed to be an “at fault” disease category. Unlike Breast Cancer, for example, liver disease is assumed to be from risky behavior or as the result of gluttony or sloth.

Stigma of Liver Disease

so what?

Suppose we ignore the wealth of data that shows that things like sugar in processed foods and gut bacteria have much more to do with weight than previously understood. Place the blame for obesity and metabolic syndrome solely on the shoulders of those afflicted. So what?

Humans make bad decisions all the time. We smoke cigarrettes despite the warnings. We text while driving. We perform dangerous physical feats in pursuit of thrills. We root for the Mets…

No one who receives bad medical news deserves to feel worse than they already do because of how their friends and family treat them. And there are real impacts to those impacted by such stigmas. A 2013 study showed that 89% of Cirrhosis patients experienced stigmas about their disease, resulting in depression, lower quality of life, and most alarmingly, decreased healthcare seeking behavior. A 2010 study was even more eye-opening, as 20% of patients experienced stigma from their medical professionals.

20% of patients experienced stigma from their medical professionals

I’ve spoken candidly here in the past about the need to be honest about weight and obesity, while respecting mental wellness. It’s a delicate balancing act in reality, because there are certainly some whom do not wish to acknowledge the facts.

I believe it starts with choosing empathy over scorn. We could use a lot more of the former in today’s world.

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