Do you feel stigmatised by your liver condition?

Do you feel you can't tell others about your liver condition for fear of being judged or stigmatised? What can be done to overcome this?

[Jtxx]

As I have AIH/PBC overlap syndrome, which are two autoimmune liver diseases, it is probably easier for me to tell peple although I will say that I do sometimes feel the need to add that it is nothing to do with alcohol or drugs depending on the reaction that I get.

Better education is required through advertising and not shying away from the topic. Liver diseases tend to be a bit of a taboo subject and not fully understood by everyone. As soon as you mention liver disease people automatically assume that it is self inflicted. x

[98percentoriginal]

I certainly felt that Liver disease carried a stigma. I had a type of biliary transport disorder, a genetic fault that I'm told is yet to be classified. The only publicity that Liver disease seems to receive is always related to alcohol abuse or obesity, so whenever anyone that didn't know me found out that I had liver disease they asumed alcohol was the cause. I always felt that when telling anyone that I had liver disease, it had to explain that it wasn't alcohol related. Thankfully I had a liver transplant 20 months ago and haven't looked back since.

[Jtxx in reply to 98percentoriginal]

So glad you are doing well. Be as well as you can be. Take care. x

[98percentoriginal]

Thanks for the reply, you take care too. It's nice to have a forum for liver disease at last.

[buster292]

I feel embrassed to tell people of my condition, which is aih as most people just hear the hepititas and put it down to bad lifestyle.. Even though i have another two autoimmune conditions people dont see the link. I would like more promotion of autoimmune dieases by the liver trust as I think this would help to educate people, as a lot of the newsletters and leaflets are about how much you drink, i dont drink and get quite upset by the way autoimmune conditions are rarely mentioned. just my point of view.

[Fluff]

A little bit. When I started being treated for hepatitis C a friend who also has it told me to never tell anybody about this as people don't understand. I am quite an open person however and told my close friends what I am going through and even though they are really supportive and well educated they don't seem to know much about hep C.

I got infected in a hospital when I was very young and I always feel like I need to tell people that, because in your early twenties, most people assume you otherwise got it through some dangerous sexual behaviours. In fact, the probability of getting hep C from a partner in a heterosexual relationship is according to my Lead nurse around 1% per year.

Also, always explaining why you don't drink.. people always ask whether you are pregnant or ill? I started always getting one drink at the beginning of the night and just drinking that one drink for the whole night so no one asks any questions or insists on me drinking.

[Hidden]

I had cirrhosis due to poor lifestyle choices (alcohol). I am 6 years sober an received my new liver on 9 July 2008. I now spend 90% of my time educating people about the over 90 different known causes of cirrhosis, helping others deal with the disease and promoting organ/tissue donor registration.

When people assume alcohol, I tell them "yes, I had a problem but I overcame it" somewhat proudly I might add. I then become like a former smoker telling people about the dangers of smoking only I'm telling them the horrors of liver disease in general and cirrhosis in particular.

I'm not shy around other people that are drinking. If they pressure me at all it provides an opening to discuss the issues of drinking. I don't have to carry on those conversations too long! A tonic or clear beverage with a lime makes others relax about my participation.

I think continued eduction by us, the people who are dealing with liver issues, as well as governmental authorities and the medical profession is key to the general public's understanding the need to respect their own livers.

[Hidden in reply to Hidden]

Well said, as a yorkshireman I have been known to have a beer or two!

That was over 2 years before the liver problems, the first sentance seems to say it all though for most people.

I have not had a drink for 5 years and like you I dont worry about it, the only people that scare me are those few that know I was dying of liver Cirrohsis and asked if I cannot just have one!

My respose was some what blunt!!

[jenniwren]

I have AIH and was diagnosed at 13 but still feel there is a stigma attached to liver disease. I recently tried to get Travel Insurance which was a nightmare as most companies have yes/no questions and are unable to understand the nature of AIH. There is also a huge stigma with NOT drinking and it should be the other way around. As a student going through Univeristy with liver cirrhosis, drinking was not an option but the reactions I got when I told people I didn't drink ranged from disbelief, to pity to people refusing to buy me a drink because it didn't have alcohol in.

I feel that more needs to be done to educate people on the range of liver diseases and their causes ad also on the dangers of alcohol. I know that the government and the NHS are making some kind of effort to reduce binge drinking but it is my opinion that more hard hitting strategies need to be put into place to educate people and to try to combat the problem.

[jaqueline]

The most difficult thing is job applications, which are sometimes now accompanied by a full medical form. Although it's said that this is to help them help you, given the choice between a well candidate unlikely to take sick leave and someone with perfect health, most employers would opt for the latter. Parties and social occasions are tricky with those I don't know well as most assume that you are being 'good' or something and I don't relish explaining a medical condition that I have had for 30+ years. I rarely drink, but sparkling soft drinks look kind of similar, so if offered I go for those. There is a prejudice against those who don't drink though, and the assumption that liver disease is self-inflicted. It would be really good if there was an education campaign to tell people about other diseases (I have a combined AIH syndrome). And I continue to be amazed by business socials where there is no option but plain water!

[AnAn]

I have found i have to explain my AIH and AIHA in the most simple terms...Its my body attacking itself....otherwise people just think you have made poor choices or are contagious and "nastily diseased". I often omit the word hepatitis and say liver disease i find i get a more positive response which is daft my doctor was even good enough to put that on my sick notes, in fact she did so without me asking...what does that tell you!

Generally there is very little understanding over all and i think a greater knowledge of the different forms of liver problems would benefit those that suffer, those close to sufferers and everyone! I perhaps may have realised that something really was wrong earlier and would have pushed my previous, rather useless, GP for more investigations!

I agree whole heartedly with previous comments that there is a stigma attached to NOT drinking, i have, luckily considering, always been pretty much tee total a drink at special occasions is all i ever really had and i have always found that someone always pushes a drink to you and cant understand and often wont except no! It ridiculous that soft drinks and fruit juices cost as much as they do at functions and places to eat/drink.

There is a lot of information out there but it can be difficult to find, confusing and often you have to know what you are looking for in the first place.

Good luck to all

[Hidden in reply to AnAn]

My daughter has problems with her friends not understanding the "not drinking" - one girl even said "if it was me, I'd take a risk" - dumbass!

[kernowgranny]

I have Cirhossis caused by Diabetes and Hyperlipidaemia. I suffered enough judgement from stupid people about the diabetes, now everyone assumes that I am an alcoholic! And I am teetotal!! Doesn't really matter how you get it, an illness is an illness.

[Liverlover]

I don't think there is any doubt that liver disease is poorly understood by many. Sadly it does carry a stigma.

Some people will always make negative, uninformed assumptions when it comes to liver disease but better education and information would really help to minimise this problem.

At the british liver trust you are doing great work with limited resources to educate people about liver disease. But the the govenment, healthcare agencies and the nhs nned to do much more to educate and inform people about liver disease. I am sure this would actually save tapayers' money since the cost of treating patients like me is high and liver disease is a rapidly growing problem.

By the way, I am very open with family and friends about my condition. It is more difficult at work but I'm lucky because my managers and colleagues are very supportive.

[nickprich]

What I have found on more than one occasion, when I say I had an LT 6 months ago is " can you drink ? ' or " of course you can't drink anymore, can you ? " . I now respond: " well, as my LT was not due to alcohol abuse, but a rare blood disorder, I have been told that i could, if I wished, have very occasional small amounts of alcohol. However, I choose not to ". This serves the two fold purpose of dashing the smugness of those who assume that all LT's are the result of alcohol related issues and mirroring back their own fascination with alcohol, not mine! In any case, any LT for alcohol related issues is a result of an individual choosing to no longer drink both pre and post op, so they are to be both admired and supported, not be the object of pity and censure.

[bobbycat]

There is definately not enough info given to the public on liver disease, be it from PBC, fatty liver, alcohol related, hepatitis etc ...there is so much about health now on TV but never about the realities of cirrhosis. Isnt it about time there was. Cancer is awful yes and it is rightly documented on TV, news etc but what about the Liver diseases. I have PBC and it has gone to cirrhosis, I rarely drank and yet I hesitate when I tell people who dont know me that I have this illness, which can become pretty awful. There must be an organisation that will step up and tell the true story about cirrhosis, get it out into the public, get it in a documentary etc...and not let it stay hidden as if it were unclean.