Apologies for a rather non-specific post. I have ARLD (diagnosed decompensated cirrhosis in May of this year - not drunk since then).
I realise and learn to deal with the fact that heavy social drinking has caused this and very grateful for the staff at the hospital.
Sometimes GPs, particularly, will comment that “people like you”, well what did you expect and speak to you like you’ve just admitted to the most heinous of crimes or something they’ve scraped off the bottom of their shoe.
Sometimes this can be harder to deal with than the complications of the disease itself (I certainly am not being flippant about the severity of anyone’s condition and I hope no one thinks that).
Think I just needed to share in case someone understood.
All care and best wishes to everyone x
Written by
SirRobert
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I'm sorry that any medical professional would treat you that way. It is unhelpful and unkind. Most people beat themselves up enough and don't need any help with that. Just focus on your own wellness and think of all the things you do right to help your liver each day...like I drank coffee, I exercised, I had olive oil, I didn't have anything harmful, etc. I start the days thinking of things I am grateful for and end it thinking of what I did right.
I definitely agree with you. There is a stigma within the medical profession and Joe Public. I have cirrhosis although 12 years abstinent from the demon drink. Smokers cause damage to their bodies but the stigma seems to be less apparent. I have experienced comments from Hepatology too and find it upsetting
Concentrate on your own health and try to ignore any comments. None of us can turn back the hands of time, but hopefully without the drink, we can all have a brighter future.
It’s hard for many ex drinkers at this time of year. Be strong and don’t put yourself in a situation where you may be tempted to drink alcohol.
This "illness" is there waiting to take hold of any one of us. Sufferers should not be treated any differently to those who take part in risky sports or those of us who chose to smoke, many years ago, before we knew the health risks. I think it is atrocious that NHS staff can and do treat cirrhosis patients as self abusers and make their feeling so obvious. Your illness is enough to cope with on it's own without having to accept extra heartache from, what can only be described as, heartless and non caring "care givers". You and your life are as valuable as anybody else in need of treatment from health workers. Please try to live as well as you can and stay as well as possible. I send you my best wishes and hope I don't offend by asking for blessings from your gods or mine.
And then you take a careful look at the person saying this to you and realise they are very well-padded around the waistline and their clothes smell of smoke. Sigh. I am sorry you have to deal with this, but there are always going to be people like that, I suppose. The only thing I would suggest is for you to consider what you are bringing to the situation in terms of your feelings around it. I was very self-conscious about my Hep C diagnosis. Any comment that might even hint at that suggestion tended to inflate itself in my mind. Best advice I can give you is to try not to take things too personally. Easier said than done, I know.
This happened to my husband more with the consultants than the GPS who were a bit more supportive. He received annual phone calls from the hospital who refused to do a face to face until he'd stopped drinking without any support as to how this might be achieved. I believe there is a stigma attached to heavy drinking and yet there is also a stigma attached to abstention as we are all encouraged to drink by the media and even sometimes friends and family.
The attitude you have described can only be detrimental as it can embed not only despondency but also reinforcement of and resignation to a feeling of having no control as it is just who you are, 'people like you'. It was a lovely nurse and her kindness in a different hospital when my husband collapsed who seemed to trigger the change. We are ever indebted to her.
Congratulations on your abstention as I know how hard it is. You are not 'people like you' you are an individual and worthy of more respect from the medical profession.
I totally agree with you as to how upsetting and unhelpful to be referred to “as people like you”. I would have asked “and what do you mean by that”.
It’s totally unprofessional, especially now in our modern world where you would expect them to have better training in communication and understanding feelings. I have cryptogenic cirrhosis (possibly caused by NAFLD). The first question was How much alcohol do you drink? Not do you drink alcohol?I never have purely because my husband doesn’t.
I wouldn’t take it personally as difficult as it is, and congratulations on your achievements, sending you best wishes
But the hard facts are the facts.. sometimes we have to "own" our own "post life" but nothing wrong with staring some of these doctors in the eyes and asking and - "have you" done similar??
But we are in th end responsible for where we are and what we are facing. But I agree judgement is not helpful - but it happens .
Sending my support and compassionate understanding. Dealing with our own demons of self-recrimination and shame is so hard, and the dread of having more added to it from those meant to help us is worse.
Advocate gently for yourself. Try not to tap into their own humanity and kindness.
I have had a full liver transplant in 2016 due to heavy drinking, but must say that my GP was very ignorant and basically spoke to me like a piece of**** , and it was only because I was taken into hospital with excruciating pain and got scans done and bloods, that things were wrong, long story short I eventually got put on the list for a transplant, has basically only had months to live. The team were great but you have to take it serious because and follow all the instructions one wrong step and you would be taken off the list asap. After all the hard work and keeping away from the killer drink, I am sat here today. Unfortunately I have developed a lot of damage in other areas like my pancreas, stomach and diabetes to name I a few, and all through my drinking. Final words which we all say I WISH I KNEW THEN WHAT I KNOW NOW.
I understand completely where you are coming from. I’ve experienced this also, on my first appointment I was 9 months sober after diagnosis. I had loads of questions.
The consultant didn’t even look up at me once, Jonny to question my claim of sobriety. I nearly hit the roof.
I have kept my diagnosis private due to this, my ex only knew as it had to be disclosed at court when trying to get access to see my kids. She kindly spread the good word and now I’m treated like scum by the majority of Joe Public in a small village.
It very much feels that your brandished with a tag and you chose this, it’s your fault.
There is some truth, that I chose to contribute to this illness. I cannot deny this. However circumstances lead me to where I arrived and I certainly didn’t expect this.
You can’t change people’s actions or behaviours. I’ve come to just accept them and let my own actions do the talking.
Although frustrating, don’t let others affect your progress.
Like others here, I'm sorry you were treated as 'less than' by a medical professional and I congratulate you on stopping drinking since May. You should be proud of yourself! I also stopped then after years of drinking most nights and a diagnosis of liver disease. What really helped me was seeing a therapist. I was hesitant at first but once I took the first step I've never looked back. Someone unbiased and non judgemental to support you along the way as well as really listening to you can do wonders. All the best.
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