Stereotyping and stigmatising - British Liver Trust

British Liver Trust

27,765 members14,042 posts

Stereotyping and stigmatising

Phil_1972 profile image

Some thoughts. I think a lot of people diagnosed with ARLD struggle with the idea they're an "alcoholic" due to the preconceived idea of what an "alcoholic" is. I didn't fit what was in my mind in terms of behaviour etc and still had a job, house, relationship and so on. My point is a problem drinker can be anyone or anybody - rich, poor, posh, working class and so on there's no discrimination. Also sometimes it's not always about quantities of alcohol or time AS a heavy drinker but simply the way it is when a liver problem develops. I've know (and know) people with ARLD who are relatively young and people who are relatively old who've drunk a lot more than me who have nothing wrong with them. The World Health Organisation discourages the use of the words "alcoholic" and "alcoholism" because of stereotyping (among other reasons) and terms such as Alcohol Use Disorder are preferred terms. It actually made me more comfortable and accepting about having a drink problem when I realised I didn't have to call myself an "alcoholic" if that makes sense. I now after three years "in recovery" see myself as just me - Phil. I had a drink problem which which I addressed although I know I can't be complacent when it comes to alcohol - ever. I'm hardly likely to forget as I've got a permanently damaged liver and have to take medication morning and night for it. The irony is cirrhosis has saved my life - another thing I hope makes sense.

62 Replies

Well done Phil - I’m glad you are doing well. Totally agree with the stigmatism, it’s such a hidden issue.

Totally agree ! I worked , have a loving great family including 2 sons and hid my drinking from them . It’s a very complex issue and lots of different reasons for it happening to you .

Hi, glad you are doing well. I agree, some people can drink a gallon of beer and never get health issues. Where as some one, let's say who is a social drinker out Fridays and Saturdays drink 6-7 pints with their mates etc drinking about 28 units a week and get ARLD.

Absolutely totally agree, it's not a label that sits comfortably when I like yourself had a good job, own house car etc, as a team at the Royal Stoke we as Social Care Assessor all went on training around alcoholism , we were asked to use glasses and measuring jugs to pour water in to calculate our daily intake, including a glass of wine with an evening meal, the majority of us drank over the recommended units and would be considered functioning alcoholics, to say we were all shocked was an under statement, My husband drinks ocopiate amounts Of alcohol, his liver is happy as Larry. I also found even for later readmissions re bleeds etc the look of total disbelief and judgemental attitude would be given to patients of a documented cause being alcohol and the " oh you must of been drinking again", I hope awareness around Liver disease is essential as a prevention for some of the reasons liver disease develops, Well done for giving up alcohol I am broaching 12 months alcohol free and stage 4 Liver Disease, Take Care xx

Phil_1972 profile image
Phil_1972 in reply to Tia2021

Some people think that if you don't use the word "alcoholic" that you're in some kind of denial about having or having had a drink problem which is untrue. I'm very very aware of what alcohol did to me or what I did to myself with alcohol and not just physically. In hospital three years ago - a high dependency liver disease ward after an emergency admission - some staff were sympathetic and kind and some were pretty cold towards me. My assumption - speculation - is the latter thought what I was thinking about myself. Nothing worse really than being in hospital having the time to ruminate on the cause of your condition. Well done on your sobriety. I set up and co-run a support group on Facebook for people with ARLD which is private and has really kind and knowledgable members. I don't want to breach any guidelines here but I could give you the link in a message if you're interested in joining.

Falco1 profile image
Falco1 in reply to Phil_1972

How unfair that some of the staff were cold towards you. Do they look down their nose at everyone in a pub who drink over 14 units a week which there are thousands and thousands all over the world and judge them?

Phil_1972 profile image
Phil_1972 in reply to Falco1

It was the worst time in my life so any feeling of negativity towards me from medical staff really stung. I'm totally appreciate of what the NHS did for me but think some of the staff could benefit from "sensitivity training" if such a thing exists!

Falco1 profile image
Falco1 in reply to Phil_1972

I agree. They are meant to be non judgemental. When I was in hospital with afib I have to say they were all friendly eventhough my afib was probably brought on by alcohol. I didn't feel like I was being judged

Phil_1972 profile image
Phil_1972 in reply to Falco1

I actually think the fear of being judged puts people off seeking help/treatment.

Tia2021 profile image
Tia2021 in reply to Phil_1972

Absolutely 💯 agree it is sadly x

Lilliebell profile image
Lilliebell in reply to Phil_1972

When I was taken into hospital very poorly I lied about my drinking as I was so ashamed I so wanted to admit it but I was on a ward and the words wouldn’t come out I thought I could just give up after 3 weeks in hospital but though I did for a while it crept back in my life and this time worse. I was hospitalised again they put my liver down to none alcohol liver disease as I still couldn’t admit it even though I knew I had a problem. I’m the end my husband realised as I hid bottles of wine in the wardrobe I think I wanted him to find them and then once I admitted it and told all my family I felt free my husband stopped drinking to and I slowly came down in 3 weeks Ide had my last glass of wine (never drank anything else ) and admitted to my consultant who actually was lovely to me . 5 years in and I regret not talking to family sooner but I got there in the end .

Phil_1972 profile image
Phil_1972 in reply to Lilliebell

You sound like me and so many people I know. It can be very difficult to open up about problem drinking. I was horrified a couple of months sober when I worked out with the help of a discreet friend how many units of alcohol I'd been consuming on average per day and per week. I realised that despite feeling ashamed (and still do at times) I'd developed a problem for a multitude of reasons and that yes I'd done things I'm not proud of also that I'd done nothing so bad that I was irredeemable. I always say to people newly diagnosed with ARLD that they can stop drinking which can come across as a pretty bold statement but I don't believe there's such a thing as a "hopeless case". I think a lot of people haven't found an approach to stop - recovery - that suits them individually and also still have the emotional issues they had which contributed to the drink problem developing in the first place. I haven't met anybody with ARLD who had a "live fast and die young" attitude. I have though met a lot of fragile and very kind people with ARLD.

Tia2021 profile image
Tia2021 in reply to Phil_1972

Yes please can I have the link, x

Phil_1972 profile image
Phil_1972 in reply to Tia2021

Sending you the link via a message.

Lilliebell profile image
Lilliebell in reply to Phil_1972

I would like the link please , my name is Lucy , Lillie is a family name we use

Phil_1972 profile image
Phil_1972 in reply to Lilliebell

I shall send you the link via message

Jules4321 profile image
Jules4321 in reply to Phil_1972

Hi Phil,

Brilliant post. Personally don’t have an issue with the terminology, but I really was a hopeless drunk. I ended up in hospital with decompensated liver cirrhosis, amongst other alcohol related conditions, for three months, in and out of comas. It took 2 more years of even heavier drinking before I accessed alcohol services and through them, rehab. I’m 7 months sober today!

I’d love to join your Facebook group, if ok with you? Could you please send me the link if so?

Wishing you a lovely day!

Jules

Phil_1972 profile image
Phil_1972 in reply to Jules4321

You'd be very welcome to join - I'll send you the link in a message. For me the word "alcoholic" suggests a lifetime condition and again just for me that's AA ideology (not just AA) I don't agree with anymore. That's not me running down AA or the 12-step approach to recovery - I just disagree with much of what AA says about "alcoholism" and "alcoholics". I'm of course respectful towards people who benefit from AA as you'll see in the group just like they are respectful towards people who benefit from one-to-one counselling or in my case (and others) SMART. My view is if something is working for someone they should stick with it.

Truex profile image
Truex in reply to Phil_1972

I would love your link... Does it matter that I'm in United States? I have found this place to be valuable and encouraging.

Phil_1972 profile image
Phil_1972 in reply to Truex

Not at all. The majority of members including the person who I created the group with are American. I’ve learnt a lot through my interaction with American people with liver disease about the US healthcare system, insurance (or lack of it) and much more. I think Facebook is down at the moment but I’ll send you some information in a message.

Truex profile image
Truex in reply to Phil_1972

Awesome, thank you!

Hi,I am the wife of a man who had an extremely unhealthy relationship with alcohol.

Heavy drinking for 30+ years, made my life a complete misery at times, I told him and told him, he wouldn’t reduce his intake, just resulted in arguments.

Every special occasion he would ruin, Christmas was a complete nightmare every year, his behaviour was appalling, both in public and private.

He was a nasty, aggressive, confrontational drunk.

He had severe withdrawal if he tried to cut back, I spoke to his GP, unless he asked for help nothing they could do.

Even on route to my Dad’s funeral, he was drinking, first thing he asked my stepmother for was a can when we arrived, very embarrassing.

Eventually I just thought, I have a life too, I’d really had enough by this point, so I went back to full time work, took a step back and left him to carry on. What will be, will be attitude.

Roll on to June 2020, he was admitted to hospital with bleeding varices, spent 11 days in ICU, and has now been diagnosed with decompensated cirrhosis. Prior to this he was drinking in excess of 230 units of alcohol per week, how he’s still in the land of the living I have no idea.

He has now gone 16 months without a drop of alcohol and he said he wishes he known how dangerous it is.

It’s not easy, he has a wide range of symptoms, and he does feel sorry for himself at times, he does get a reminder from me sometimes when he pushes my buttons, for example we had been invited to a wedding reception and he refused to go, doesn’t feel well enough, but he also expects me not to go, not happening, I very rarely go out these days and I have a life too.

I very rarely drink and never in the house.

So I work full time, studying for my level 3 in health and social care, and I am determined that I will get this qualification, I have taken on all the responsibilities of paying bills and running the house. He absolutely detests me going to work, and thinks I should be his carer full time, he can be absolutely vile at times, I’ve already told him that there is no way I’m giving my job up, I get the frustration and everything else that goes with it, but it was his choice to keep going, and alcohol was his friend, and like I’ve always said, actions have consequences.

It doesn’t just affect the person with an unhealthy relationship with alcohol but it also affects family members, and I feel like we get left behind and very little in the way of support.

Phil_1972 profile image
Phil_1972 in reply to Lils2019

I know now how it impacts the family. When I was an active problem drinker I wouldn't/couldn't deal with any criticism (real or perceived) about my drinking. I know at times my behaviour was erratic and I could be extremely argumentative. Ultimately a lot of this was related to wanting a drink, needing a drink physically in the last year definitely etc. My relationship with my wife is so much better now but I have to accept that she has the right (can't think of another way of putting it) to bring up how I was when I was drinking if she feels upset about memories of those times. It's not something she does often and certainly not as a weapon or throws it in my face. For me as part of growing as a person and also as part of the approach to recovery I follow I have to live my life now as honestly as possible and accept the uncomfortable truths of how I was. That's not me living in the past at at all but recognising and learning from it. I know there are support groups on Facebook which accept family members of liver disease patients.

Glenfaba123 profile image
Glenfaba123 in reply to Lils2019

Hi lils2019, your story absulutly mirrors mine, all what you mentioned about your partner i can relate too, if you read my profile and other posts you'll see, the only difference is my hubby's still drinking every day, his health is so bad but he doesn't care and won't listen to a word i say, so ive given up and have left him to his own devices now, he's been a heavy drinker for 40years, how hes still breathing i dont know, im living a life of misery, we've been married for 32yrs have 4 grown up children, and they've seen it all over the years growing up, our son doesn't want anything to do with him because of the life we've had with him which i can't blame him tbh, but i still love him and care for him and feel sorry for him, i have always helped him and always will, its hard living with a alcoholic but i dont know no different so i just carry on now, many a time I've felt like throwing in the towel for my own sanitary its so hard 😑

Kind regards to you and your family

Take care

Julie x

I totally relate to this and to this day a lot of my friends think i had an issue with pneumonia and that damaged my liver not alcohol. I did go to hospital with pneumonia however the liver damage was down to drink. I'd drank since i was 16, turned into an every night bottle of wine and couple of cans, then 2 bottles of wine, then a bottle of vodka, then pouring vodka into water bottles so my family didn't know. All this time i had a very responsible job (still do) was promoted a number of times and lived what from the outside would look like a "normal" life. Why i drank more and more i don't know, but i do know that i could not get through the day without it. The title of "alcoholic" summons up all sorts of images, down and out, good for nothing etc, its not surprising people don't get help sooner.

Its an odd one really as you don't hear people saying that the heart attack victim caused it by not exercising or that its the diabetics own fault as their diet was bad. It seems that having liver damage is something we deserve.

Anyway, I'm happy now, 4 years sober and not missing the pop at all. If people want to sit and judge me, calling me and alcoholic whilst knocking back a few glasses of wine, then so be it, i just hope it never happens to then

Chris x

I've disclosed to a few people the cause with context. Some people who've known me a long time were very surprised as they'd rarely (and in some cases never) seen me drunk publicly. For a number of years I worked in publishing and like you got promoted several times, bought a flat and so on. The last couple of years I was drinking were a nightmare though and in the summer of 2018 my health rapidly declined - and I mean rapidly. I'd been told in 2015 after some routine blood tests my liver was "starting to struggle" by a GP who didn't say much more and I didn't want to pursue the conversation. I didn't want to have an honest conversation with myself about alcohol which I thought was the "solution" to my issues with anxiety including panic not a large part of the cause. Fast forward to 2018 and I had ascites, mobility issues (I could barely walk), bleeding in places I'll leave to your imagination and on September 5th that year nearly dying in A&E and being diagnosed with cirrhosis. I'm a lot more at ease (most of the time!) without alcohol but I had to accept help and I'm glad I did. Three years sober and no interest in drinking alcohol which in itself seems miraculous some days!

Chris

I can see why you may feel that but many people who have coronary heart disease are absolutely referred to as having unhealthy lifestyles and are supported and guided accordingly. Likewise people who've developed type 2 diabetes are specifically talked to about how their lifestyle and weight have directly led to their illness. Smokers with lung disease also, and so on. We tell patients to lose weight or risk imminent demise as much as we counsel patients to stop drinking.

Whilst it's true that many labels are incredibly unhelpful (and are often lazy tropes) I don't think it's fair to say that most patients with ARLD are always more stigmatised in a clinical setting (the regret patients feel is often more tangible than any disapproval expressed by carers) That said it is worth remembering that many clinicians are regularly abused by intoxicated patients which doesn't help.

In fact I actually think that the behaviours associated with drunkenness have coloured society's views: drinkers behind the wheel, aggressive behaviour, etc. It is absolutely unfair to see all drinkers in this way of course.

Few people choose to damage themselves. Education and compassion are what we all need when we are unwell and these qualities are also needed to bring about change. And yep, less judgemental language will absolutely help people to engage.

Best

Chris

Well said Chris.

Lils2019 profile image
Lils2019 in reply to chrisw740

Hi,My husband hasn’t been stigmatised by any hospital staff, or his GP, he has however been asked about his drinking history.

Education is helpful, however with alcohol it has sort of become the normal way of life, and in my husbands case it was anything and everything to have a drink.

I tried everything but unless he wanted to cut back and give up there was absolutely nothing I could do.

As with everything in life we shouldn’t tar everyone with the same brush, I really try not to do that, and behind every behaviour is a reason.

Been married and living with someone who has an active addiction is not easy, chaos and drama, someone who is emotionally unavailable, and at times I feel like I raised my children myself, because my husband was otherwise engaged. He never came to parents evenings, prize days at college, enrolment days etc etc, Addiction is extremely selfish.

I really wouldn’t want anyone else to live through what I’ve been through, the verbal abuse, I was arrested twice, husband self harmed, and called the police, I was held for 17 hours the 1st time, I’ve had bleach thrown in my face, I made a complaint and because he countered it, and I was arrested because he was disabled.

I made a complaint against the police.

I went to a works Xmas party, he came with my son to pick me up, I endured all sorts of verbal abuse and name calling that night because he’d drunk nearly a litre of whiskey before picking me up.

Boxing night a couple of years ago, I was in work the following day, he was ranting and yelling at 2 in the morning, playing very loud music, he’s accused me of all sorts.

Two months before he was admitted to hospital he was very intimidating, had me trapped in a room, making all sorts of threats, I’ve had phones thrown at me, property broken, and I was actually making plans to leave as soon as I had enough money.

I’ve lost count of the amount of times the police have been out to our property.

I contacted relevant people and I got no support whatsoever.

Whilst he was in hospital the staff witnessed him been absolutely vile to me, so much so that I said stop or I’m leaving, he carried on and I got up and left, the nursing staff came over to me and asked if I was ok, they were also concerned about his erratic behaviour and a DOLs was actually put in place.

And now, life is very different, he doesn’t drink, has a lot of regrets, and is very poorly, plays the victim card which I won’t and don’t buy into, he does absolutely nothing around the house, totally incapable, has episodes of HE, and has cateracts, waiting on an urgent appointment for surgery they are that bad.

He’s been referred to the QE to start the process of transplant.

So it is what it is, but one thing for sure, my husband is very poorly after years of alcohol abuse, but I still intend to live my life, I won’t be held to ransome because of the poor choices he has made.

Phil_1972 profile image
Phil_1972 in reply to Lils2019

Is he involved with any recovery organisations? Any I’ve ever been involved with encourage - very much - self-reflection and honesty about past behaviour and also behaviour “in recovery”.

Lils2019 profile image
Lils2019 in reply to Phil_1972

Hi Phil,No he isn’t involved with anything at the moment, he’s very poorly and doesn’t leave the house only for appointments, has chronic fatigue and sleeps a lot of the time, and with Covid it’s been very difficult, also has cateracts so struggles with balance, he’s as blind as a bat, neither of us have been offered anything in the way of support.

He admitted to his liver consultant that alcohol was his way of coping, but he’s also very proud of himself for not drinking anything for 16 months and has said he will never touch the stuff ever again.

Phil_1972 profile image
Phil_1972 in reply to Lils2019

Yeah lockdowns and shielding have impacted a lot of people with ARLD and lots of other conditions. As I’ve said to other people here I created and co-manage a private Facebook group for people with ARLD he’d be very welcome to join if he’s active online.

BlueAster profile image
BlueAster in reply to chrisw740

Brilliant and well observed explanation as always.

I'll send the link in a message

When I first stopped drinking my confidence was non-existent and my head was a mess. I felt like I had to to tell people why I didn't drink anymore - almost like justifying my abstinence. I learnt over time about new research into alcoholism (I'm using the word despite my recovery approach SMART avoiding it generally) and began tentatively to be more confident about saying "I'm Phil - ex-problem drinker" kind of thing. People can (if they want) stereotype me but I'm more confident now in my own skin and don't feel the need to explain myself as much. I'm not comparing like for like at all but ex-smokers get on with life without cigarettes and I'm getting on with life (the best I can with a very damaged liver) without alcohol. I don't make a big deal out of it - I just don't drink. I still tell the odd person why but more to do with spreading awareness of ARLD than justifying my existence.

Hi my name is Dean and I’m a human with a story just like you. And if you must know,I used to be a caterpillar and I became a butterfly.

Some great comments here. Society encourages alcohol consumption and normalises it. Just look at TV programmes and watch the amount of times people are drinking or in a pub. There’s a pub on every high street and more aisles of alcohol in supermarkets than any other commodity. Alcohol use starts innocently enough and creeps up on people, till it gets out of control. I’m completely alcohol free now, but it was what happened to me. I knew I had a problem but was struggling to address it. I cut down from time to time, but never went a day without it. That is till my body decided it was ready to ‘call time’! Hospitalised and very sick, I began to realise what I’d been doing. The hospital staff were superb though, and I can’t say I felt judged. I was a difficult patient. I was withdrawing from alcohol, very sick, not eating and had ?HE. As well as being heavily nursing dependent physically, I was emotionally very fragile. My long term partner had decided to end our relationship whilst I was in hospital and had started to get very difficult about discharge planning, saying I couldn’t come home. This was coupled with being newly diagnosed with cirrhosis. I can honestly say I was in a mess. I can’t fault my consultant or the nursing staff. They got me through it and most importantly got me home. Superb discharge package awaited me, fantastic carers and strong psychological interventions from an alcohol counsellor. Roll forward six months and normal bloods, running 2 miles a day, out riding 3 times a week and absolutely no alcohol. I feel better than I have for a long time. I was judged by my partner and his family, but my own family have been a rock. I can’t fault the care I’ve had from the professionals either.

Phil_1972 profile image
Phil_1972 in reply to

Thank you for responding. I think some staff were definitely judgemental but also I was hyper-vigilant about being judged as I was judging myself so harshly - you know? Like I expected to be judged and looked down on I guess. As I've also said I'd never criticise the NHS as my life was saved in A&E and on A7 North at University of Wales Hospital in Cardiff. Like you I was very frail emotionally and cried a lot during the time in hospital and when I went home. Well done on your sobriety - sounds like you're doing really well.

It's kind of complex because individually some people might not want a lifetime of abstinence or find the prospect daunting. Obviously when a liver is as damaged as mine the choice is drink and die or stay sober and do everything else suggested by medical professionals to have a shot at a life with some quality. I know that with fatty liver the suggestions range from a couple of weeks to a lengthy period of abstinence. Again it depends on the person and their circumstances AND their insight - or lack of it and I don't mean that in a derogatory way. Some people might say it was the wake-up call they needed to address a drink problem while others might not think they have even one. It's not for me to say but what I will say is the group I created and co-manage on Facebook is for people with ARLD abstinent from alcohol or striving to be who recognise they had/have a drink problem. It's not a group for people who intend to drink again in the future whether they have fatty liver, alcoholic hepatitis or cirrhosis. It's for people who recognise they do or did have a drink problem which led to their diagnosis who want or are doing something about it.

This makes for a very positive read. I actually was taken by ambulance after a non alcohol related fall, in fact on the night in question, I hadn't even had a drink.

Friends called an ambulance and whilst it was clear I was unwell, jaundiced somewhat and showing other symptoms perhaps more obvious to a paramedic, the first thing they asked me in front of a gathered room of friends and acquaintances was "are you an alcoholic?". It left me feeling naked and ashamed. There was simply no need or reason to say what basically felt like humiliation.

Once diagnosed with liver disease in hospital the word alcoholic was tossed around liberally and full of judgmental accusation. I was fully functioning, fit, lucid, working and socially competent. Around me in my ward were others in similar or much darker situations. To me it was clear not just by appearances but by conversations, just who were alcoholics and who were those who had included alcohol too unhealthily in their lives.

If I can see it, and others like us on this site can see it then the medical profession must do the same. I have changed my drinking because of my illness but not because I am an alcoholic.

Absolutely 100% agree with you Phil. My Hepatologist says I am not an Alcoholic because I stopped drinking on my own. No AA or any other support groups. Sheer willpower and the fight to live. And 9 years on I am still alcohol free. And hope to stay this way. I was so ill and didn’t even know it. But onwards and upwards. None of us can turn back the clock, we can only do our utmost for a brighter future.

I also agree with the stigma label, even within the medical profession. I am still in the process of going through the menapause. Oh my. Shocking mood swings. My liver nurse said to speak to my GP as they could prescribe something. So I waited over 3 weeks for an appointment with a lady GP. She looked at me as though I was dirt on her shoe and said ‘you can’t have anything for the menapause’!!! I came out in tears and rang the liver nurse. She was mad and upset for me and said I should report her. But she’s a partener in the practice I replied. Then she should set an example she said. So I am like a ping pong ball sometimes between the GP and the liver nurse. And here I am with mood swings for over 2 years without any help. However I have decided to use my willpower and battle on. My late Mum never had anything. In those days ladies had to suffer. This is just one example. It was the same when I needed root canal treatment and was in pain. I did eventually get codeine after numerous telephone calls.

But There is definitely lots of support and help out there. But sometimes it’s a struggle accessing it. My message would be to anyone who has a problem with alcohol, please reach out. Alcohol is poison and as my Hepatologist once said, would you drink from a bottle labelled Poison? No of course you wouldn’t. And this is what alcohol is especially to someone with cirrhosis.

Phil_1972 profile image
Phil_1972 in reply to Oscar21

Thank you for responding. It's a conflict for me to discuss one specific (and very experienced) consultant hepatologist I've had several appointments with as on one hand he's very thorough when it comes to asking questions (and arranging tests) about my liver but on the other hand doesn't seem to know much about addiction. As an example during one appointment he pretty flippantly used the expression "addictive personality" which surprised me. A few comments he made about problem drinking I've felt like challenging but didn't think it would make much difference to his position and I don't want to come across as defensive or argumentative. One area where he DID respond positively was recovery approaches other than AA and he actually made some notes about a recovery organisation near where I live based on SMART.

Lilliebell profile image
Lilliebell in reply to Oscar21

I had a terrible menopause and have been on HRT for 5 years now which has helped considerably, all the time having liver cirrhosis. My consultant and doctor have been absolutely fine about it as the positives far out way the negatives . My liver has stayed compensated for all this time . If you are struggling see if you can talk to a different doctor maybe as yours seems terrible and should not have treated you that way at all . Good luck and you don’t have to put up with the mood swings .

Oscar21 profile image
Oscar21 in reply to Lilliebell

Thank you Lilliebell for your response. Just proves that us ladies don’t have to suffer even though we have cirrhosis.

Phil_1972 profile image
Phil_1972 in reply to Lilliebell

I'll stick with him and hope he takes more onboard for his own professional development! I don't mean that in an arrogant way but am saying if doctors listen to patients more it's good for them and their work.

Hi Phil, my dad had a drinking problem for over 16 years. He has this business in Romania selling beverages to restaurants and pubs. Oh I don’t want to think about how difficult it is to have a drinking problem and work in a job which involves selling bottles of alcohol.

Because he didn’t have a 9-5pm job he would make his own schedule, he was most of the day out with his jobless friends drinking. He would come home around 2-3 pm drunk, sleeping in alcohol, then would wake up and would go off drinking again. Not everyday was like that though. He was never late either he would always come home by 10 pm. In 2019 he did go to the doctor and the doctor said he’s liver struggles and if he carries on drinking would get cirrhosis. He stopped for 3 months, then we went together on holiday where he had a beer here and there and I think that was the trigger. He went back home and he started his old habits Then pandemic came and his business had to be closed temporarily because of covid restrictions. Well , me and my mum thought because of pandemic and because pubs and restaurants had to be closed he would stop drinking but he managed to find other group of people with same drinking problem close to home and he drunk even more. Even when some of his friends died this year because of alcohol he didn’t want to stop drinking. I have always asked myself why would he go out and drink, why was he struggling giving up? I honestly cannot get my head around why being drunk every day would make you feel better?

He’s been sober for nearly 6 months. He is 52 years old in the hospital with decompensated cirrhosis, ascites, jaundice and few days ago he developed hepatorenal syndrome. Doctors doing the best they can to treat him and stabilise his liver condition.

Phil_1972 profile image
Phil_1972 in reply to Simonamur

I genuinely believe - and I use my own life as an example - that chronic problem drinking messes your head up as well as your body and leads to thinking in a very distorted way about liquor. A few months before I was taken to hospital in an ambulance one of my best friends died suddenly as a consequence of alcoholism. I was devastated. It had also been extremely upsetting witnessing his decline over several years. In my mind he was an "alcoholic" because of specific ways he was behaving and I wasn't because of specific ways I wasn't behaving. Does that make sense?

A couple of weeks after he passed away in May 2018 I had a routine appointment with my GP who was so alarmed at my appearance she sent me straight away to a local hospital where I spent two days and had a paracentesis procedure. I then - against medical advice - discharged myself because (and this was very difficult for me to admit to myself even some months sober) I wanted to drink or needed to drink.

The rest of the summer of 2018 was awful as I went downhill very, very fast and by early September I could barely walk, collapsed all the time, was in a very confused state mentally, had heavy bleeding and so on. I'd actually got to a point where I wasn't (comparably) drinking as much as I had been for years as my liver was saying "I don't want this!" when I attempted to drink and gagged.

For me it's got to be an illness - mental or/and physical - to be drinking under these circumstances. Obviously alcohol "relieves" the symptoms of withdrawal and on the mental side there is a feeling or combination of feelings - albeit temporary - of a "sense of ease and comfort" to borrow a phrase from AA.

Three years sober I realise it's an awful way to live - it doesn't matter if you're rich or poor addiction is dreadful. I'm just so glad I don't drink now and hope your dad will see improvements in his health over time.

I agree totally , alcohol most definitely messes with your mental health .my head felt like a washing machine stuck on a spin cycle, I to would gag whist drinking wine out of a water bottle in the bathroom so no one would catch me and if they did It would look like water , that’s not a place I would or would want anyone to go through i started drinking to stop the anxiety and depression I had but it made it 100 times worse .

Phil_1972 profile image
Phil_1972 in reply to Lilliebell

What disturbs me now is that things I did like taking empty cans and bottles to a bin 200 yards from our house became "normal" to me. I didn't want my wife to know (although she actually did) how much I was drinking so disposed of my "empties" elsewhere. She'd actually raised the subject a few times and I refused to discuss it. It's actually like looking at someone else's life i.e. I think "was I really living like that?" and of course I was. I don't talk so much now about examples of day to day life like a drunkalogue but how it affected me (and my family) in a bigger way. I also don't live in the past but recognise - which I think is important - what alcohol did to me in all areas of my life as well as my health.

From a non-professional point of view in my case I guess if I did at one time have fatty liver diagnosed it might have been the wake-up call to stop drinking - or not. It’s all speculation with me as I’ve “only” ever been diagnosed with cirrhosis. The questions (in no particular order) I think someone needs to ask themselves when diagnosed with alcoholic fatty liver include do I have a drink problem? Is abstaining on medical advice difficult for me? Is it realistic for me to go back to moderate or “social drinking”? and so on. If someone is honest with themselves and concludes their relationship with alcohol was and is likely to be unhealthy again to me the logical course of action is abstinence even if the liver is OK. I’m not anti-alcohol by the way. I’m just saying what I think on this subject.

I had an ultrasound scan done when I was first poorly and then a pet scan which came back with fatty liver this then changed in a matter of 3 months to cirrhosis as I carried on drinking , I think I must have had a worse liver than I thought and I was so happy when they said fatty not cirrhosis that I then convinced myself I could drink again which started slowly and then far too much . In my case I so wish I had stopped when they said fatty liver but as I was not telling them that I was drinking too much they didn’t advise me at all not to drink . I’m not against drinking sensibly but if your liver is already not happy I would tell anyone now to stop completely, this is obviously just my own opinion but having cirrhosis isn’t great and is avoidable. And being tea total is actually great , I enjoy myself so much more now and if I’m at a party or pub I can just drive home whenever I want without an Uber and a sore head and stomach in the morning. 🤪

Falco1 profile image
Falco1 in reply to Lilliebell

Hi Lilliebell thanks for your reply. Sorry to hear what has happened to you. 3 months from fatty liver straight to cirrhosis!!! Think I have answered in my head the outstanding questions that I have had from reading your message,and know what decision to make now!! I am going to a wedding on 5th November (after my blood test of all days) and think will be the dessie driver myself.

Lilliebell profile image
Lilliebell in reply to Falco1

I think my liver was very fatty if that’s a thing 🤷🏼‍♀️ , i remember my first year of not drinking and I had a busy year of weddings and hen parties and the obvious Xmas , new year work doos , I remember thinking when I drank that I would never enjoy myself if I could never drink but quite the opposite is true 😁. I wish you all the best and hope you can do this as your liver and health will love you for it . Enjoy being the designated driver and remember the power you have with that 😉😉

Falco1 profile image
Falco1 in reply to Lilliebell

Thanks for reply. I do fancy a beer at times and other times I don't. Guess that is normal. Today not bothered and intact the past week. Hardly have a bloated stomach now which I was getting when drinking and feel better in myself past week. All the best too.

Phil_1972 profile image
Phil_1972 in reply to Lilliebell

I’ve interacted with a lot of people who’ve been told by medical professionals and also people in support groups who should know better that fatty liver “ isn’t that serious”. My understanding is that although a person with fatty liver often doesn’t have any symptoms it’s a warning sign and it should be emphasised that changes need to be made. Most people I’ve met online and face to face with ARLD had to admit to themselves that they - for whatever reason - had to commit to abstinence as their “relationship” with alcohol would never be “healthy” again.

Trust1 profile image
Trust1Administrator

Hi Phil

Thank you for raising such an important topic and it is so refreshing to see people commenting and debating this without any negativity :)

People go on to develop an alcohol problem for many reasons. For some, this may be the need to be in the company of others, companionship etc. For others, it might be out of habit or a routine. (It’s 6 o’clock and I always go to the pub at 6). In some people, it may help to try and forget a traumatic occurrence in their life. While for others who lack confidence in themselves it can help to allow them to come out of their shells and mix better.

Over time, a person can forget why they are drawn to alcohol in the first place. Alcohol can become their best friend, after all, it’s always there when they need it. We can recall happier times so we turn to alcohol in an attempt to change our mood and lift the depression.

The person who calls in the pub after work each is drinking out of habit. This becomes their routine, they are no longer drinking because they want to, but out of habit.

I certainly went through my drinking life not understanding the psychological drive that was behind my drinking. My drinking was primarily due to a damaged childhood. Alcohol became my escape. It would lower my inhibitions and allow me to speak out. It gave me inner confidence.

It wasn’t until I suffered from the variceal bleed that I looked back upon my life in an attempt to understand and make sense of how everything had gone so badly wrong.

Back in the 1980’s I became hooked on the “At home computer” phase the country was going through at the time. I had back then a BBC Micro, computer. It came with a software program called, “Biorhythms”. The biorhythm theory is the pseudoscientific idea that our daily lives are significantly affected by rhythmic cycles with periods of exactly 23, 28 and 33 days, typically a 23-day physical cycle, a 28-day emotional cycle, and a 33-day intellectual cycle.

It was also at this time I began to suffer from depression. These episodes would last for about three days. I would become despondent, withdrawn and enter a dark melancholy place. I would self-medicate with alcohol in an attempt to lift the gloom. At first, this seemed to work, my mood would become a chemically induced happier place. That is until the alcohol had reached that happiness plateau, and began to drive an even deeper depressional state. In the end, I would be drinking for the whole three days. It would then take me a further two days to rid my body of all the toxins, and then I wouldn’t drink again for a further 24-days when the whole sequence would start again. This pattern of behaviour seemed to fit the Biorhythms 28-day emotional cycle. (I have since found out that this Biorhythm theory is now being taught in some fields of nursing).

This pattern of behaviour had gone on unbeknown to me for 30-years. As I lay there in that hospital bed, I could finally make sense of it all and join up all the dots. My childhood upbringing had caused so much hidden damage, which in turn was driving the depression. Alcohol had been my way of self-medicating. I could finally see the bigger picture. It was as if I could now understand it, and strangely enough, get some sort of closure. I couldn’t control those things from my past (not yet anyway). But I could change my approach to self-medication. This was my lightbulb moment. It sort of set me free. I no longer needed alcohol.

What I’m trying to get at here, is that asking yourself some questions as to why you need to drink will help to hopefully break that lifestyle, or make changes to not need to drink.

Alcohol is not your friend.

Some 68% of people who end up with Cirrhosis of the liver and End-stage Liver Disease are not addicted to alcohol. They certainly have an alcohol problem but drink because they choose to. Not because they have to.

We in society, tend to use the American approach in wanting to put a label on things and people. (I personally don’t approve of this as it not only stigmatises a person but can also wrongly label someone, and sadly mud sticks). The word “Alcoholic” is a confusing one. For some people, this means an addiction or dependency, while for others it can mean anyone who drinks too much.

“Alcoholics Anonymous” in my opinion, has done so much damage by wrongly labelling a person. Here you are often labelled an alcoholic and if you disagree then you are in denial. Also, this label is for life.

When I tried to reach out to AA, I was twice asked to leave. I was told that if I could go three weeks without a drink, then I wasn’t one of them and that I should go.

So, I hate to use the word “Alcoholic” as I hate labelling people. If a person was to be called an alcoholic, then this should mean a person who has an alcohol addiction and not a person who has an alcohol problem.

This isn’t to say that I am against AA per se, it has helped many people over the years and that can only be a good thing. I personally feel a person no matter what their circumstances should be respected.

That homeless man who’s passed out on a park bench has a story. “oh, just ignore him, he’s just a hopeless alcoholic”. What they don’t see is a broken man who served two tours in Afghanistan and saw his best friend blow to bits.

That person needs help, not a label.

I'm not anti-AA (I have some strong views which aren't for sharing here) but I do feel there's often an either you're for or against mentality i.e. no middle ground. There's also like a siege mentality - people become extremely defensive if you question any aspect of the program. Personally SMART was extremely helpful as were relapse prevention groups which I'll attend again when they're up and running. They had structure, a theme each time, we had a little fun, the groups were numerically smaller and the people wanted to be there whereas I knew many attendees at AA meetings for various reasons didn't really want to be. The group I co-created and co-manage on Facebook has a fair few AA fans and that's cool - I have no issue with it and feel very strongly that if something is working a person should keep doing it. People should, however, not be afraid (like I was) to ask questions, express doubts or feel x, y or z isn't for them and I feel very strongly that people with liver disease or other conditions caused by alcohol often have a lot more to lose if they drink. I'll finish by saying SMART isn't for everyone either - or rather people have told me they don't get on with the approach.

Wow so many can relate to this including myself, I think a massive education drive to enlighten some people into the wears and why for,Support groups are so very much needed.

So many assume and judge and never feel the need to look past the person.

There but for the grace of God go anyone, even moderately socialising and consuming alcohol can land you in the hospital with this debilitating disease. x

Hi Phil, I was just replying to your more recent post but an error code came up and I can’t see it. Has it been deleted?

Phil_1972 profile image
Phil_1972 in reply to BlueAster

I deleted it as it was being misread and I’m not looking to argue.

Oh dear, I must have missed all that

You may also like...