What you told us
In total 1,134 people with liver disease answered our survey. Almost three quarters said they had experienced stigma about their condition “somewhat” “quite a bit” or “a great deal”.
Other common health problems used to be hidden away because of shame and stigma. But greater awareness, and a better understanding of the complex causes of disease, mean that people are now able to be more open about what they are going through, without worrying that they will be blamed.
Sadly, this still isn’t the case for people with liver disease. 9 out of 10 people think that liver disease is still stigmatised.
And while people with other serious illnesses may have friends, family and colleagues rallying around to provide support, around 7 out of 10 people with a liver condition find it hard to even talk about their diagnosis. Many people feel they must keep it hidden.
“I have told none of my friends, colleagues or family just my immediate household”
Many people with a liver condition have faced thoughtless comments. We created some example comments based on things we have heard from people with liver conditions. Then we asked how many people had experienced something similar. Perhaps unsurprisingly the most common stigmatising comments were based on assumptions about alcohol.
The biggest impact of stigma is on healthcare
We already know that liver disease is usually diagnosed late. But stigma is making the situation even worse.
Almost 1 in 3 people with a liver condition feel that stigma has prevented them from seeking or receiving the help they need. The causes of this are complicated.
Sadly, some people feel that they do not deserve help. This self stigma comes from all the other stigma surrounding liver disease, especially the stigma around alcohol.
“The stigma is quite often from me. I feel it necessary to tell people that my fatty liver is not alcohol related!”
But whatever the cause, no one chooses to get liver disease and everyone deserves to be heard and helped.
Some people fear being judged by healthcare professionals, and unfortunately it seems they have reason to worry.
Of the people with liver disease who answered our survey, around half have experienced stigma from a health care professional.
This took many forms.
People whose condition is nothing do with alcohol told us that they were not believed if they said they do not drink.
“A doctor wouldn’t believe my liver condition wasn’t caused by alcohol”
People with viral hepatitis were treated as dangerous and contaminated.
“Dentist refused to treat me and announced it in a public waiting area”
And people who needed support to change what they eat or drink instead faced blame.
“Consultants and GPs automatically blame drinking alcohol and weight. (I) found very little advice regarding the correct diet”
Almost half (48%) thought that unfair or untrue assumptions by medical professionals impact the care they receive.
Stigma has an impact on every aspect of people's lives
It isn’t just healthcare settings where people with a liver condition face stigma.
People told us that stigma can impact every part of their life.
We heard from people who have had friends abandon them and colleagues tell them they do not deserve medical care.
7 in 10 people told us that stigma affects their sleep.
Dealing with stigma on top of a serious medical condition left almost 1 in 3 people considering suicide or self harm.
It doesn't have to be this way
We also heard stories of how people have overcome stigma or been surprised to be met by kindness.
“I was lucky that my work totally understood and supported me.”
Stigma is based on false assumptions and the belief that people with liver disease are somehow different to everyone else. The truth is very different.
“Specialists have always been honest, with whatever I ask them about”
This is why we are standing together with people with liver disease, their families, loved ones and health care professionals to stamp out stigma. By showing people that there are many causes of liver disease, that it happens to people just like them and that, whatever the cause, no one asks to be ill, we can change attitudes.
“Staff at … hospital were and are excellent”
People with liver disease, whatever the cause, should be supported not judged. Let’s end the stigma.
Sign up to our campaign, and stand with us today to Stamp out Stigma.Add your name