Your views on stigma

[Pasturesnew]

Hi all, just wondering if anyone is willing to give me examples of stigma you may have experienced. To help me be distracted and to gain knowledge and having depression and anxiety I'm doing an online course on "mental health problems!" if alcohol has caused you to experience mental health issues would you be kind enough to let me know if you have ever felt stigmatised by society I. E. Friends, family and others in society. If so in what way did you stigmatised. Thanks

[BritishLiverTrust1 Partner British Liver Trust]

Dear Pasturesnew

We're sure members will reply to your post soon, but in the meantime you may want to take a look at the results of our recent stigma survey:

britishlivertrust.org.uk/st...

Best wishes

British Liver Trust

[Pasturesnew in reply to BritishLiverTrust1]

Thank you so much

[Oscar21]

Absolutely 100% agree there is a stigma if alcohol is the reason for a liver condition. Even in the medical world, GPs, Drs, Nurses etc.

Eg. I had a lump in my breast and was referred to the hospital, the Dr looked over his glasses and asked very abruptly why I had cirrhosis, when I answered, he tutted. I was so upset at the time, now I expect it and would tell him he was being rude.

Another example is before diagnosis, a big fat nurse in hospital asked me nastily how much I drank. I wanted to reply, 'how much do you eat'. Of course I didn't, as it would of been rude and unkind, but if she said it to me now, I probably would.

Apparently it is a stereo type that people with alcohol problems are homeless, penniless, friendless etc. This is what the first Gastro Dr told me when I was admitted to hospital, he said he could see that I was not like this, but even if I was, he would still help me to the best of his ability. This stigma is totally the opposite in lots of cases, mine included. We run our own successful Business, have our own house, money in the bank and I was diagnosed with cirrhosis nearly 11 years ago. Through drinking wine, never even felt poorly, therefore the shock was unbelievable that I was so ill. We work hard, no ones given us anything

The Gastro Dr was very clear and pointed it out to me in black and white. Whilst medical intervention was vital for my recovery, it was me that held the glass of wine to my lips and therefore it was only me that could cease this habit.

I also had a fantastic Hepatologist at the time, she has since moved back to Australia. I didn't know the first thing about livers, and off I went to my appointments with notepad and pen and asked and wrote down loads of questions and answers. She could clearly see that I was determined to turn my life around and I immediately ceased any alcohol and still remain abstinent.

I personally think too much is made about mental health though, eg I experienced a great amount of hair loss last year and when I eventually got a telephone appointment with a GP, all he was interested in was my mental health and did I feel suicidal? Of course not I said, I felt as though he was trying to put words into my mouth. I do appreciate that people suffer and I have family members with depression.

It's been a long road and I see it as climbing a mountain, At diagnosis I was informed that I was at the bottom of the mountain hanging over the cliff edge and it was 50/50 which way I would go. I quickly decided that I wasn't going to die through alcohol, so I very slowly managed to climb my way up the mountain. I'll never get to the top, but I certainly aren't going over that cliff edge either!!!

To anyone struggling, please be honest, firstly to yourself and then to the medics. Seek help, don't be ashamed, we can't turn the clock back, but we can look forward and learn from our mistakes.

We only have one life and I'll be 60 next year and hope to continue to maintain an ok lifestyle

[redpoint72]

Hello love.Oh yes there is definitely stigma regarding alcohol induced liver disease/cirrhosis. Some may say were being oversensitive, but were not. My consultants are extremely to the point and matter of fact, but thats there job to tell us how it is....and be truthful to us about how were going to deal with this liver disease, and I appreciate that. But I had a bad experience with a sonographer doing my ultrasound.....just plain rude,she didn't want to be doing an ultrasound on myself.....just full of sarcastic comments.....I couldn't think of what to say at the time,I so wasn't expecting that type of attitude from someone doing my ultrasound,the previous ones have been great,explaining what there doing etc,there not there to point a finger,I have worked my backside off to get where I am now in a so much better place,but she seem to think I was something on the bottom of her shoe!!!!. I did report her,and said I never wanted her to do an ultrasound on me again.4 years abstinent. So there is stigma, most definitely. Although I know its myself that had put myself in the terrible situation I was in,I didn't need reminding of it !!!. I'm already good at running myself down,no one else needs to do it for me. But im also really grateful for the help and support of 99.9 % of the consultants, nurses etc....some have been amazing, really have especially the liver nurses .

My best. Chris

[Aotea2012]

Sadly, there is stigma in society... so it’s inevitable that it will show up from time to time in the NHS. Everyone who works in it is from society after all. I have cirrhosis caused by alcohol and you’d have no idea if you met me in the street. In fact, I feel so well at the moment I sometimes wonder if my diagnosis’s correct…but I know it is. I had fantastic care when I was in hospital….but not every experience was positive. I have to say the overwhelming majority were though. I always scratch my head over the alcohol bit. Attitudes are very weird/not consistent. On the one hand alcohol is everywhere…you really notice it when you don’t drink. Its in at least 4 aisles in the supermarket, in every soap, advertised between soaps…we’re encouraged to drink to celebrate, commiserate, to forget, to remember, to gain courage…to calm down. If you get into trouble with it…which given it’s one of the most addictive drugs out there (and weirdly legal) then you must be somehow a freak. I haven’t drunk in over 2 years. I don’t have a problem being abstinent…it’s everyone else who worries that I haven’t got a drink in my hand at parties, weddings, dinners, Xmas, New Year. It’s all very contradictory and confusing.

[OMBRAMAIFU in reply to Aotea2012]

Excellent post! It sure is "contradictory and confusing".

I don't drink - never have (my partner has cirrhosis) - but I fully understand why people do. Sparkling wine, or deep ruby-red, in a glass on the table covered in white linen in a convivial restaurant; a pint after a winter-walk in a cosy, warm pub - what's not to like? I frequent public houses often - I like the atmosphere and the jollity and friendliness of the people socialising with a drink... I actually like the smell of alcohol (I use it in cooking) - the yeasty smell of beer, the heady, almost exotic, smell of wine. A tipple is something to look forward to - especially for those who have a hard day, for whatever reason. Unfortunately, it has side-effects which can obviously be extremely damaging - and sometimes even drinking in moderation can cause liver damage. But no-one sets out to deliberately destroy their health through drinking - apart perhaps from the very young who experiment sometimes with all kinds of mind and body altering substances!

Like any addictive drug - I'm sure it's damned difficult to just stop - especially if drinking forms part of your social life and is an 'unwinding' mechanism at the end of (or during) a difficult day. So, no judgement from me - I don't imbibe, but I also have my 'rituals' in life! I'm 'gently' encouraging my partner to drink less (with considerable success) by recognising that, psychologically, when you remove a pleasurable habit - you've got to replace it with something else that gives pleasure, or something that one can look forward to. Most of us understand the need for a healthy-lifestyle, a good diet, and exercise... but on their own - it's not enough, one has to have a purpose, and 'rewards' are all part of that purpose. My partner has acquired a taste for good coffee, and now has 2 / 3 cups per day which I make for him (he's disabled) and serve ritualistically in a 'posh' coffee-mug with a silver teaspoon and a tiny coffee-biscuit, and we sit and chat over coffee... something he now looks forward to instead of the beer he'd normally consume.

I wish everyone the best of luck in this journey. If people judge you, be they medical professionals or others, just remember that there but for the grace of God go they, and don't be discouraged by their ignorance or lack of understanding... they too probably have their 'rituals'!

[Aotea2012 in reply to OMBRAMAIFU]

You are right, it’s an easy habit to form, but a much harder habit to lose! No one thinks when they have that lovely glass of wine, or maybe two (or in my case I loved it so much..a bottle!) that Mr Cirrhosis is lurking. Fortunately the liver is pretty resilient, as I’ve found out…but the way society treats alcohol is bizarre. Encourage everyone to drink, even stigmatise them if they don’t, then wonder why the level of alcohol related deaths is on the rise and then blame the individual for that!

[Katt12340]

Hello, I've been on the receiving end of the stigma and ignorance that assumes all liver problems are caused by alcohol. I have primary sclerosing cholangitis, which accounts for (I believe) around 12% of cases of cirrhosis in the UK, and I can honestly say that, without exception, including my own family, every single person I have discussed it with, including a lot of non-liver specialist medical professionals, have all assumed and not been bothered to clarify that alcohol is the cause of my condition. PSC is not caused by alcohol in any way, and I often feel vilified that people assume it is. I was a drinker at the time of diagnosis but have been abstinent for 18 months now; and it's almost as if people expect me to get better now I'm 'off the booze'. It's incredibly frustrating!

To be honest, I was treated with more respect when I just had 'a liver issue' before my diagnosis and everybody assumed that because I was a drinker that must be it - so rallied round to support me with giving up, alcohol support specialists and so on, support groups etc. Now I'm just in a stigma void. And yes it does make me feel depressed.

Katy x

[Louby-]

No found too much stigma all autoimmune with me. & more & more being chucked at me. Positive mindset gets Me through head to toe issues posted yesterday about them all. Good forum excellent advice. Learning lots 1st appointment tomorrow re new diagnosis diabetes 3 wendsday & one appointment face to face end of May. Rheumatologist yesterday laughed with me even opened door for me. He had just told me gone from NAFLD to NASH to fibrosis next step transplant. Won't get that don't want it. I am 69 in June 70 next year be 5 years of life that I wasn't expecting neither was ITU Sepsis Sepsis shock & legionella pneumonia keeps giving bloods all ok 2018 2019 got all this highly recommende talking therapy bank on with me only been 3 times. Health anxiety. Most definitely spooky how very accurate told me her own story lovely talented lady. Local to me. Chin up & soldier on best you can. Ignore the ones that dismiss you put you down. Last appointment with Rheumatologist September last year. Told him politely & respectfully playing with my precious life gotbup & hobbled out. Just knew yesterday was going to be my day & finally get help. No new meds to protect my organs pleased about that as allergic to so many meds toxic onesPosted all this yesterday perhaps I have underlying medium thoughts & gut feelings like my talking therapist was going to do physiotherapy few years back got all the books. No concentration at time. May do it soon. If I have the energy or strength let alone concentration or brain fog

Not too old am I 70 is the new 50 isn't it. Take care of you 1st always ❤️

[Ambrosian]

There's stigma even when it's not alcohol-related. Told a neighbour I had a liver condition and he said "Oh, too many pints?" I haven't drunk alcohol for 20 years and my condition is auto-immune hepatitis. An all too common experience.

[x007jcp]

Hi Pastures - first, have courage! However difficult it may seem, you can get through. The future looks like a long time if the prospect is a continual struggle. It gets easier each time you suppress your urges.

Your original post seems to attribute mental health issues to alcohol. Could it be the other way round? I used alcohol as a crutch for a long time and, in truth, still have difficult times. As for stigma… you can’t change other people’s behaviour so you either get upset or consign specific individuals to your internal scrap bin!

Best foot forwards C

[Louby- in reply to x007jcp]

Going to be my happy placeMy tranquil place

My relaxing place. Breathing in pure fresh oxygen

Just what Dr's ordered

Yes is is mental v alcohol or A v mental? Both I think 🤔

Whatever I am alive & amazed how much strength I have. Take after my dear Mum bless her 92 in June with rapidly declining dementia. In pain physically & mentally every day. Who am I to grumble. No one really. Yes in pain physically not often mentally my mothers daughter. So strong & stubborn have both those in abundance if I didn't I would not be hear today telling my story. Daddies girl always. Bless him such a loving caring daddy. Miss him. Forgive mum in the winter of her years. She answered her phone yesterday saying ' wonder who this is hello looby' 😂 20 minutes good conversation I love to hear her laughter every day she answers phone manage to get her laughing. She overeat & sleeps lots what more can I ask for. 🥰😁❤️

[NorthLad]

Hi, I have experienced stigma in a very difficult way. In Jan 20 I was in hospital for a month with alcohol related cirrhosis of the liver, decompensated liver and hepatic encephalopathy. I has 3 colleagues I had known for over 20 years. They have all shunned me and seem to have come up with the same excuses that when they rang me I was incoherent! Well they clearly has no understanding of my situation and I feel thought I was of no use to them anymore. It was difficult to deal with but over the last three years, throughout my recovery I have met so many more new friends and a large number within The British Liver Trust. On a more sensitive issue my condition has played a big part in what potential new partners think. In many cases as soon as I mention my situation it seems that a barrier comes up and very often through their own experiences with someone with an alcohol related problem. I can understand that to a degree but it has made me re think about my future regarding relationships.

Throughout all of this I stay extremely positive and I’m a happy chap as I know how far I’ve come from those extremely difficult times.

I wish you well on your journey and I’m always here if you want to ask me anything else.

Warm wishes.

Steve

[Louby- in reply to NorthLad]

Chin up Steve these folk walk amongst us. Judge condemnHurt us. Their loss not ours. Surround yourself with people who love & support you unconditionally ❤️

Shove negative folk in the bin. Take good care of you always x

[NorthLad in reply to Louby-]

Thank you so much for this. It still remains a mystery but what you say is so right about surrounding myself with people who love and support me unconditionally.

Take care 💙

[Tizzwas]

Ohhhhh I can. Yesterday!!! I have a massive abdo hernia (2nd one, first one incarcerated and I nearly died). Been waiting to see surgeon for 4 months. Saw him finally yesterday and he said he wasn't willing to operate on me while I still had liver disease. Well, it isn't going away mate!!! He then said if he repaired it, then it wouldn't work. I asked if this was a definite and he shrugged. So I said 'what would you suggest I do with this then?' He said well you need to stop drinking....... I've not had a drink in 2 years and my bili is in normal range as is everything else. He'd not read my notes, looked at my scans, he just looked at me and made a judgement. In my job if I did that, I'd most likely be sacked.

[Louby- in reply to Tizzwas]

I reported my rheumatologist for negligence & my doctor Get amazing 1st class service now. Its a easy process good luck x

[NorbertGrubbins]

Hello - it is so reassuring yet saddening to see so may posts telling of these experiences - I fully understand, recognised many points from personal experience and want to share a couple of things I have been finding out since I was diagnosed three years ago.

First is when I was initially hospitalised - I had started having seizures when I didnt drink for a few hours (though because of automatic shame i didnt seek help) and i had one in public that led to an ambulance being called. The nurses were 'off' (one repeatedly asked 'is this normal for you?' and talked to me as if I was 'simple' [sorry, i dont knwo a better word]) and the ward doctor pretty much asked me to drink myself to death (i remember his words: "if you want a drink when you get out, you know what to do") - i had suffered bad burns just before this (most of one leg and half of my torso) and they refused to put me into burns care - just added what my GP said were inadequate wound dressings that led to serious infections - THAT got me into care for skin grafts, serious infection control etc. I am now disfigured (fortunately it isnt visible) and often suffer skin itching and pain etc and lost a lot of muscle in my right side - i think my hip is now suffering. All because i appear to have been dismissed as a stupid and worthless boozehound (I am actually highly qualified (MSc, PhD) have published my own research and work in communications, having had to deal with severe neglect and trauma in childhood that has haunted my whole adult life - more stigma that really ought to have been directed at my family). Hence the drinking. And severe and limiting mental health problems (yet more stigma). I paid for my own therapy, because drugs made it all worse. And here is another component - because i didnt have a diagnosis from an NHS doctor beyond my mid 20s, the mental health stuff was questioned (different stigma but it all adds up)

Since diagnosis, doctors have been doubtful about prior alcohol consumption (I was honest about how much i drank) and have questioned subsequent abstinence (all that therapy i paid for didnt stop it, but it helped me manage things after the crash). Also, friends have said 'it's just the liver - it heals itself, doesn't it?' (i suppose the fibroscan change to 73 to 31 is a sort of healing) - as if the ongoing limitations are made up

Yet, spend ten minutes on LinkedIn and we are knee deep in professionals confessing to their problems and getting applauded for it.

I don't understand the world of other humans. I am very lucky that i have a small family unit of my own now and that means the world to me. But i have given up searching for any kind of acceptance. Addictions, metal health, physical health - there are rules for all of them, it seems.

If you got this far, thank you for reading I hope you all find ways to be happy that go beyondwhat the world dictates

[Twinklu]

Hi, I have cirrhosis caused by uncontrolled diabetes and whenever I have an appointment anywhere I always get asked how much I drink, and when I say I don't drink they look at me and say something along the lines of " it says here you have cirrhosis have you recently given drink up".

When I was 1st ill, we had no idea what was wrong with me and I had to go for loads of different tests and scans, I was due a camera down my throat when I got a phone call from a guy who informed me that he was a gastrointestinal consultant and he was cancelling my camera as it was the wrong one as with having cirrhosis of the liver I needed a different type, that was the 1st I knew of my problem and when I said but I don't drink (because at the time i didn't know you could get it any other way) he told me he didn't believe that I didn't drink as having cirrhosis tells him a different story.

I also have sciatica and went to see a neurosurgeon in Dec regarding it.

When I got there she apologised and said that none of my history was on the system, then in the next breath asked how much did I drink when I said I don't she said "oh have you given up only it says on the system that you have cirrhosis.

I just said it's amazing that none of the relevant history comes over but they always manage to get it in there that I have cirrhosis but never list how I got it.

I hate that I have to explain myself to medical people who should know better, I don't mind explaining if it's posed as a question like "I see you have cirrhosis has it been established how you have developed it but it never is, I just feel like I'm to blame and am looked down at because of it xx.

[PadoJoe]

Everyone is stigmatised by society in one way or another. Your are what God says you are. Wonderful, created in his image as am I. Are we perfect no but nobody is. Don't let others put their unhealthy crap on you. Much love!

[Louby-]

Good Morning all I am cross reading all these posts. I can relate enormously with them all & all you lovely humans Three things

Blood

Water

Religion

All three are vital to life.

Blood

When I had my son my 1st child I had a very rare blood

My son & I were in big trouble. He could of been a blue baby & I had to have a transfusion with Anti D in it

He is ok & I am ok just

Water. Again vital for life in any way or form. Having been intubated & induced coma. I obviously could not have Water, only dripped through me. When that came out I asked my 24/7 nurse in ITU if I could please have some water, she asked & gave me less than an inch of cold water

This went on for hours, eventually she gave up & bought me a jug of iced cold water. Still warming me to sip it slowly. As if, ooh I eventually quenched my thirst.

Religion

Lapsed catholic still have morals & standards

I believe in my higher power who is my Guardian Angel. I have seen him once. I can describe him to you now. No I was not hallucinating thank goodness that's horrid. This was beautiful & calming & reassuring. This was many many years ago when I was in bed very stressed at the situation I was going through

I do know he was watching over me from then & still is now. Whatever your religion is I respect. Only one I don't.

Believe in yourself trust your self & gut feelings. Respect yourself. Surround yourself with positive folk who love you care for you & support you unconditionally ❤️

Accept reflect challenge trust think out side the box believe in your higher power. Pray silently or out loud anywhere don't have to be on your knees. Laugh cry sob listen to mood music. Be your own boss. Do your own housework. Not dusting. Enjoy every single moment of every single day. Always put yourself 1st others come closely 2nd. Eat healthy drink healthy don't take meds you do not need especially toxic ones. Turn up to every appointment scan whatever by any means you can by hook or by crook. Always be polite & respectfully. Learn when to shut up. Your fate is your fate we are all still alive no matter how we feel.

Except apologise to those that deserve a apology keep your enemies close your loved ones closer. Just be you! That's how your higher power made you wants you.

Just be happy

Love & hugs to you all

Enjoy your day however you can just do your best

Never to late to make amends

I am celebrating today my life my little rescue tzus 5th birthday 🐾 looking forward to seeing my talking therapist later. Only 4th time. Brilliant she is. Love my precious life & have wonderful plans 🙏❤️

You must too take good care more hugs 🫂

[NoMorePlease]

Hi, I hope the course you are doing will help you in the meantime... The first time I felt stigmatised was by a consultant doing the morning rounds.Bearing in mind I had just beaten death by a couple of days, I was still processing the Cirrhosis dx, I knew absolutely zero about it!

Consultant gets the "how are you today" q&a out of the way when he suddenly leans over the bed and quite deliberately slowly says "and what about the alcohol?"

So me being me leant towards him and said "what about it? I DON'T drink!"

He knew that though, he had my notes on him that quite clearly stated NAFLD!

Ahhh the *in-laws* "but cirrhosis is caused by heavy drinking" they have known me for 30 yrs, they know I don't drink, my well meaning sister "you know the first thing people are going to think is that your cirrhosis is caused by heavy drinking".

To be honest sat in the hospital bed it had never entered my mind, every time someone looks at my distended stomach, I now see the cogs whirring away!

Although I have to say I was asked "when was I expecting" by a lovely lady I got chatting to in a hospital lift, I didn't know whether to be horrified or elated, if, at 56 I look like I *could* be about to give birth, I'll take it 😕😊🤣

As for alcohol, my mother was an alcoholic, traumatic childhood

=

C. PTSD!

Good luck with your course, if I can help further just yell, quietly though, loud noises sets the old flight reflex off,

Take care of you x