For years, Christa Lei Sonido feared doctor visits. She had been diagnosed with metabolic dysfunction-associated steatohepatitis (MASH) at the age of 21.
“It seemed like every physician I saw would just look at me and say, ‘You can control this if you stop drinking and lose weight,’” recalls Sonido, 32, who lives in New York City. “But I rarely touch alcohol, and I do have a healthy diet. It was so demoralizing,” she says.
Sonido's experience -- shared by untold numbers of people with MASH -- is one of the reasons why the condition’s name was changed to MASH from nonalcoholic steatohepatitis in 2023. Similarly, non-alcoholic fatty liver disease, or NAFLD, became metabolic dysfunction-associated steatotic liver disease (MASLD) at the same time.
“Both patients and physicians heard the term, and automatically associated it with alcohol and being overweight,” says Maya Balakrishnan, MD, a liver specialist at the Baylor College of Medicine in Houston. “But there are many different causes of MASLD, and not all are related to obesity.”
About 100 million Americans (around 25% of the population) are estimated to have metabolic dysfunction-associated steatotic liver disease (MASLD). Of those, about 1 in 5 will go on to develop MASH, which is a more severe form of the condition.
But despite how common it is, there’s still a lot of stigma around the disease. A 2022 study found that about two-thirds of people who live with MASLD report experiencing stigma.
Why MASH Is Stigmatized
Patty Zamora’s mother, Patricia, died in January 2025 from cirrhosis related to her MASH. Today, Zamora often finds herself explaining to others that it wasn’t related to alcohol.
“People hear the words liver problems and cirrhosis and automatically assume my mom was an alcoholic,” she says.
The stigma linked to MASH is often based on misconceptions and a general lack of understanding, notes Bruce Dimmig, 68, an American Liver Foundation advocate from Surprise, Arizona, who also lives with the condition. “People often associate fatty liver disease with poor lifestyle choices,” he explains.
“There’s this belief that if that person only watched what they ate, or exercised more, or didn’t drink so much, they would have been able to avoid it. The underlying assumption is that the person with MASH is a weak person, that if they just had more self-discipline, the condition wouldn’t have happened.”
Since MASH is often a silent disease at first, it can also add to the stigma, notes Balakrishnan.
“If someone doesn’t look or appear ill, it may reinforce the assumption that if a patient doesn’t feel well, it’s their fault,” she explains. When early symptoms like fatigue crop up, they may be dismissed because a person with MASH may be overweight or obese, or doesn’t exercise.
A survey done by the British Liver Trust found that some of the most common thoughtless comments people with MASH heard about their liver disease included the following:
- 70% were told that liver disease is only caused by alcohol.
- Around 40% were told that they should lose weight and exercise more, or that they should have looked after themselves better.
- A third were told that their MASH was their own fault.
The Effects of Stigmatizing MASH
This sort of stigma can affect every part of your life. A survey done by the British Liver Trust found that:
- 4 in 10 people with liver disease reported that it affected their family.
- 8 in 10 said it affected their mental health.
- 7 in 10 said it made it harder to socialize.
- 6 in 10 said it affected their work.
- 7 in 10 revealed that it even affected their sleep.
So, it’s no surprise that people with MASH don’t want to talk about it and often try to hide it. The survey found that about 70% of people who live with a liver condition like MASH find it hard to even talk about their diagnosis.
There are ethnic disparities when it comes to MASH, too. Research shows people who are Hispanic are about twice as likely to develop MASLD as either Blacks or Whites. Other studies show Hispanics are more likely to carry certain genetic mutations that put them more at risk for the disease.
But Hispanics are also more prone to experiencing stigma that prevents them from getting the care they need, according to Juan Pablo Arab, MD, a hepatologist at the Virginia Commonwealth University School of Medicine in Richmond, VA.
“The words liver disease, or cirrhosis, carry a lot of stigma in the Hispanic community because people associate it with alcohol consumption,” Arab explains.
Zamora says this type of stigma was a barrier that prevented her mother from getting the care she needed.
“She was a Latina immigrant, and some of what her doctors told her got lost in translation,” Zamora explains. “One reason she let her MASH progress to the point it did was that she was embarrassed that she had cirrhosis.”
MASH Stigma in Health Care
The British survey found that about half of people with MASH reported experiencing stigma from a medical professional, which affected the care they received.
“For years, doctors seemed to pin my liver disease on my weight,” says Sonido. “I was told over and over that if I were thinner, my MASH would resolve itself.”
One study of doctors found that 70% believed that their patients’ lack of motivation made it hard to discuss weight loss with them. About half thought their patients didn’t have enough willpower to make lifestyle changes and take care of other conditions that led to their MASH, such as diabetes.
“It was always interesting to me that my doctors would blame my weight, but not want to talk about other parts of my medical history that made weight loss more difficult, like painful periods that limited activity,” says Sonido.
Sonido also came from a family of physicians, which left her even more frustrated with her doctors.
“I was always anxious because I was never given more information about my MASH other than I needed to lose weight,” she says. “I wanted more actionable advice on healthy eating and exercising, even with period pain.”
How to Deal with MASH-Related Stigma
If you live with MASH and face stigma every day, it can seem overwhelming. But there are things you can do to deal with it so that you can better live with the condition. Here are some tips:
Talk to people who understand. It can help to talk to other patients who live with MASH. They most likely have also faced the same sort of stigma and may have tips to help you handle it better. The American Liver Foundation and Liver Education Advocates both have social support groups. Another online social network is myMASH team.
Speak up. Sometimes, health care providers don’t realize that they have said something that makes you uncomfortable. It’s important to let them know how you feel, stresses Sonido. If they refuse to run a certain test or refer you to other specialists, request that they document it in your file.
“Sometimes that will be enough for them to actually listen to you,” says Sonido.
Find a care team you trust. More than a decade after her MASH diagnosis, Sonido says she’s found medical providers who aren’t judgmental.
“Initially, I searched for female doctors of color because I wanted to be seen by someone who looks like me,” stresses Sonido. “But I still found some of them disappointing. It was a lot of trial and error — I had to meet with several different physicians before I found the ones who were the right fit for me.”
Know your rights. The British Liver Trust survey found that some of the worst stigma occurred at doctors’ offices and at work. If you have a bad experience with a health care provider, you can write a letter to their office or hospital. You can also reach out to your state medical board to file a formal complaint.
The Americans with Disabilities Act (ADA) also offers some work protections. You can’t be fired simply because you have MASH. Your job also has to offer certain accommodations, such as:
- Time off from work for medical appointments
- Flexible work schedule
- Breaks to help manage fatigue
Be straightforward. Social situations can be tough with MASH. You may be the only one not drinking, or you may eat very little food. Sometimes, you may even want to wear a mask if your MASH has weakened your immune system.
“People often ask what’s wrong with me, since I wear masks in public places,” says Dimmig. “I just tell them I have liver disease and leave it at that. Or I say I’m trying to stay healthy. You don’t owe anyone an explanation.”
Find supporters. Try to surround yourself with others who want to live a healthy lifestyle. This will make it easier to eat nutritious food, stay active, and avoid alcohol. They can also offer you moral support.
Take care of yourself. Zamora was diagnosed with early-stage MASLD two years ago. Since then, she’s cut alcohol out completely, avoids sugar, and stays active. “It helps me feel better to know that I’m doing something to help to slow progression of this condition,” she says. “If people ask why I’m not drinking, I matter-of-factly tell them that my mother died of liver disease and I’m focused on my health as a result.”
Talk about MASH to others. Sometimes, the best way to deal with stigma is to address it head-on. “Whenever I can, I let others know that I live with liver disease,” says Dimmig. “Anytime I take an Uber, for example, I make a point of letting my driver know I can’t drive anymore due to MASH complications. The more we spread awareness and educate about MASH, the more likely we are to drive away stigma.”
