We know that many people experience stigma and negative attitudes about their liver condition. We'd like to hear your experiences and thoughts to help us work to reduce this stigma.
Please take a moment to complete our survey: surveymonkey.co.uk/r/X6FGBX5
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I’ve completed the survey. There is definitely a stigma attached to people like me who have cirrhosis caused by alcohol. I am now 10 years into sobriety and hope I live for another 10 at least. I regret telling anyone when I was first diagnosed. It all came as such a shock to me and my family. I didn’t even feel Ill. I feel as though people look down on me with disgust. Do People who smoke suffer the same kind of stigma as people who drink? I think not.
Thing is...now that I don’t drink, I’ve noticed how much others do! Alcohol is ubiquitous. It’s so ingrained into society that it’s amazing that stigma is attached to those who get into trouble. If I read the newspapers correctly during Dry January there seem to be pages and pages of help for those who are struggling, yet you have done it for 10 years. It’s all a bit contradictory.
I was a wine drinker for years. Never ever did I think I had a problem, but it nearly killed me. I’ve learnt my lesson and will never drink alcohol again. There needs to be more education on the dangers of excessive drinking.
Even in the medical profession, I have experienced stigma. Whilst in hospital waiting for a diagnosis, a big fat nurse said to me ‘ how much have you drunk’? I wanted to say ‘how much have you eaten’? but I’m polite so didn’t. But I would now. She was rude to me and at tge time I was so upset, probably because I was so ill and didn’t even know it.
I’m No one special and I tell my story to give hope and encouragement to our newly diagnosed members. There is a life after a cirrhosis diagnosis providing you take all the advice from your Hepatologist.
Snap...wine was my downfall! It crept up on me, I enjoyed a nice glass cooking dinner, then a couple with it, then perhaps a nightcap. Only it all mounts up and in no time I was in trouble, even though I denied it at first. A diagnosis of cirrhosis for me woke me up and snapped me out of drinking. Nearly died first though! I’ve not drunk anything for over a year now and not really had a desire either. Dwarfs into your 10 years though. I’ve actually had amazing care from the NHS. I haven’t come up against too much stigma. I have found it a bit in nursing, but not much. I actually feel quite respected by the professionals I’ve had treatment from. My GP often says well done on my abstinence, my consultant too. I think in many ways they are pleased they’ve had a success story. I thought my dietician was going to kiss me when she discharged me as I’d learnt so much about my diet, how to cook it and had recovered from the shrunken, muscle wasted skeleton I’d been when she saw me first in hospital. I live so much more healthily both physically and mentally since my diagnosis. I’ve read some horror stories on here and so consider myself very lucky.
Aw bless you. You are doing so well Aotea2012. Keep it up and you will reach ten years too. Although you will be ten years older ha ha. Age is just a number and as long as my Birthdays keep coming, that will do for me Although there’s members who have been tee total for a lot longer.
I also am to polite to comment on weight but just imagine if you did and said I think you should give up eating, my biggest bug bear is have you ever smoked any one who lived through the sixties did even if you never bought one. Doctors used to have ash trays on there desks. How things have changed.
My cirrhosis was brought on by wine and I drunk a lot. I gave up 3 years ago today!. I have only told the people that matter in my life others that I just don't drink because of Dr's advice. I have noticed how much others drink but also how many can just be happy with a glass or 2.i have just been on a work trip for 3 nights to Sardinia. Had one instance of a manager of a hosted meal looking at me like I had 4 heads when I said no to wine. I said I was on medication. Why should I have to explain myself though. Still got things going on but I'm in a much better and happier place than 3 years ago.
I always say no thanks l don't drink poison!
Mine was caused by wine too. Just last week on holiday the waiters kept bringing alcohol I refused by telling them the truth. I have reached the point now where if others have a problem with why I had a liver transplant then it's theirs alone deal with it. I am proud of what I have overcome I just try to keep telling myself I am stronger than you will ever be. I'm now 4 years sober and 3 years post transplant.
I think the stigma comes from the fact people aren't educated about what causes and the different types if liver diseases. They just assume it's Alcohol or poor diet related. From the BLT I'd like to see less of Alcohol Related, and Fatty Liver Related diseases. These two seem to get the most coverage but it's not fair to the likes of those who have liver disease that is caused by other factors such as mine - Budd Chiari. I didn't do it to myself. I am struggling everyday knowing I'm getting worse, having surgeries and needing a transplant. I appreciate lifestyle has a huge factor into causing liver disease and therefore it needs to be shared to help people understand the damage they are causing themselves and the resources that will need to be ploughed in - but the other cases are just as important. We feel very alone. Especially when your condition is 1 in a million.
I've had many of a doctor tell me its a breath of fresh air treating those who haven't self inflicted.
Your last sentence is in itself an indication of the stigma attached to alcohol related liver disease by doctors and nurses. The medical profession do not have the right to give brownie points to those whose cirrhosis is not down to alcohol. Especially when statistics show that doctors are themselves heavy drinkers.
No brownie points were given. It's a fact. So much of liver resources are used on patients who drink too much or are obese.
None of us are perfect Moly84, and we don’t live in a perfect world either!!! Us ex drinkers are entitled to care and as long as we listen and learn from the words of our Drs, then we have as much right as anyone to receive treatment. I suppose you are a size 10 and have never touched a drop of alcohol!!!
. Well tough. As I say we don’t live in a perfect world.
With the amount of tax drinkers pay with every drop of alcohol they consume, you could say they have paid for their treatment. Not something which should be encouraged just thought l would throw it in !
When l questioned the doctors who were caring for my husband in ICU about why they would have considered him for a liver and kidney transplant ... why would you do this for someone with a self inflicted disease? He kindly said, we don't look at it that way. He is a very sick man and it's our job to try to save him. Never any stigma attached from his care team, just empathy and devastation when they couldnt save him
And I suppose the underlying mental health issues suffered by many alcoholics are "self-inflicted" too, are they?
There is a lot of info and links regarding Budd Chiari on the BLT site. As it is a rare disease, there are far fewer posts about it compared to poor diet or alcohol misuse causing liver problems. I hope you are receiving good care. I wish you well.
Laura
Well,I filled in the survey. I so wish that people could see the wider reason why people drink or drank. I've not in over 3 years. but there is still plenty of stigma about...not fair at all . we are all born equal,no one better,no one worse. chris
I have tried but failed to access the survey. It says I am being re-directed, but never goes through. Sorry Taar
It just worked for me - when you get to the re-direct page you then have to click on the link there and the survey should open.
Redirect Notice
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If you do not want to visit that page, you can close this browser tab.
Katie
I completed the survey on behalf of hubby and I - he has cirrhosis due to Auto Immune liver disease and there definitely is a stigma largely due to a misconception that most people have that liver disease only happens due to drink or drugs.
Sadly, my hubby has met this amongst people who really should know better i.e. doctors. When hubby was first in hospital HDU following emergency admission due to a massive variceal bleed he had a doctor pass his bed and say "Let this be a lesson to you, you need to change your ways!". Hubby is life long t-total (apart from 4 pints on his 18th birthday that immediately got thrown up and not a drop since), none smoker, no tattoos, fit long distance walker with not a peck of fat on him. Hubby immediately got the attention of a nurse and told her to confirm and challenge what the doctor had said.
We then had it off our GP when hubby went in for an appointment after suffering a bit of an infection after an endoscopy, we were gobsmacked when GP asked "And are you managing to stay off the alcohol?"
We'll not go into the nurse at his first PIP assessment because she had definitely made her own mind up based on hubby having cirrhosis.
Whilst alcohol obviously is a contributory factor to a lot of people's liver ill health there is a need for people to know of the dangers but it does get overdone and then creates a stigma. Unfortunately, the George Best factor still lingers over the t/p procedure - people actively tick that they won't donate their liver because of the misconception that "they only go to alcoholics" (not my words) & that the liver might be "wasted".
Mainstream media, tv, soaps all tend to focus on the 'lifestyle' related causes to liver disease - normally alcohol - it would be good if portrayals were accurate and actually showed the real battle that you guys who have had t/p due to alcohol related liver disease have and the hoops you have to jump through to get there but they don't they portray some bits like Peter Barlow in Corrie still having an active sex life, drinking within the period he's supposed to be abstinent before t/p and then a t/p coming out of the hat for him. Likewise in East Enders, River City etc.
We find ourselves trying to educate strangers when we discuss hubbies illness pointing out that he has this condition despite being life long t-total and absolutely clean living. We explain about childhood diseases of the liver, auto immune, genetic etc.
There definitely is a stigma to liver disease, the words cirrhosis flags up one image in many folks minds. Members of the AIH group also find that people think they are somehow infections when they say they have hepatitis - even dentists and stuff have missed the 'auto immune' angle.
Definitely more education work needed to get the word out there about ALL the various kinds of liver illness.
Katie
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