Breaking the Silence: My Experience with Liver Disease Stigma

Stigma. Now, there is a word most liver patients are used to experiencing, which is unfortunate. The first thing that people think when you tell them you have a liver disease is that you drink too much or that you are an alcoholic, so right there is where the liver disease stigma begins.

Understanding stigma

When you look up the meaning of the word “stigma,” it is a mark of disgrace, shame, and intense disapproval directed at a person or group. I had that right from the start of my diagnosis; in fact, you could say that until then, I was guilty of thinking the same way.

When telling people I had nonalcoholic steatohepatitis, as it was called then, I would always emphasize “non-alcoholic.” Liver disease stigma is negative and harmful, and it can be dangerous to the person or people it is directed at.

The impact of liver disease stigma on mental health

According to the American Liver Foundation, metabolic dysfunction-associated steatotic liver disease (MASLD) is found in 75 percent of people who are overweight and in 90 percent of those with severe obesity, so for us, the stigma is doubled.¹

Our mental health can be affected by so much negativity, as it is common for people with liver disease to also suffer from anxiety and depression, so we need to get this perception changed.²

We are seen by so many as being dependent on alcohol and food, and as though we are to blame for our own health conditions. I personally think this is why so many of us who suffer from liver disease hide what is wrong with us, but we really need to talk about it and get our message out there.

We need to stop passing judgment about things we know nothing about. It is unbelievable that, in this day and age, we are still not believed by so many and that we are still being judged. It is not until you are diagnosed with this disease that you realize just what people’s perceptions are and the liver disease stigma attached to it.

The importance of MASH awareness

If someone told you they had cancer or a heart condition, or any other disease for that matter, to be honest, people would not dream of treating them with the stigma they direct at liver patients. Unfortunately, unless changes are made, I can only see this getting worse.

The number of patients with MASLD or MASH is only going to increase and get worse as time goes on. We, as MASH patients, need to get our stories out there for everyone to hear and educate people about liver disease stigma.

My experience with liver disease stigma

Being a MASH patient, and also being obese, has subjected me to the stigma of these diseases. You don’t always realize what you are actually going through until it’s maybe too late.

For me, it was when I told someone close to me that I had MASH, and they actually said to me: “I didn’t know you drank so much; maybe you should cut it down, and you would also not be so fat.”

Wow, unbelievable to think that they were thinking it; it is bad enough, but to actually say it—well, need I say more? From that day on, I built a brick wall around me to protect myself from any more of these comments, because, believe me, that hurt.

Did people really see me as the fat person who drank too much, considering I don’t drink? After that, if I was asked to a party or function, or even just going out for a meal, I would have panic attacks just opening the wardrobe to try to find something to wear.

Navigating the mental toll of stigma

I became very withdrawn. I would get up, go to work, come home, and lock myself away; this had now become my life. When I look back, the liver disease stigma was worse than the disease itself.

One minute I would be very emotional, with lots of tears and self-doubt; then it would flip, and I would be very angry and full of resentment. This is why liver disease stigma really does affect you, both physically and mentally.

The stigma had caused me to become very depressed, which did not help me at all. I could feel the real me slipping away, and I was becoming a person I didn’t like or even know. Thinking about it now, it was like a form of grief and loss for the person I once was.

Knocking down the walls I built

Luckily for me, the day came when that started to change, and I decided to knock that wall down. It was only brick by brick, but I got there.

I’m not saying it was easy to do, because it wasn’t. I still felt that the damage had been done. The confidence I once had is gone, but hopefully that will change in time. For me, I was not only a sufferer of a disease I knew nothing about, but I also felt like a victim.

A victim of the hurtful and unkind people out there, known as “stigmatizers,” who discriminate against others without knowing the facts. It is disrespectful, insulting, and demeaning to the people they aim it at, who, through no fault of their own, are living with this disease.

A call to end liver disease stigma

We are not the ones who should be ashamed and lock ourselves away. We are the ones who need to hold our heads up high and educate the people out there who still believe in the liver disease stigma.