Steve’s friends dropped him when he had alcohol-related liver disease, including one he’d known for 25 years. He still feels the pain of that rejection and others which impacted on his mental health. Thank you for sharing your experiences with us, Steve.
My journey is far from unique and it’s one I never asked for, nor do I want sympathy. What I do want for us all is more understanding.
Alcohol is normalized. You see it all the time, in the sponsorship of football matches and in every TV drama the characters get a bottle of wine out or say ‘I need a drink’. When alcohol is great and everyone’s having a great time it’s normal, but for those people who have a problem it can be horrendous and should never be marginalised.
I knew I was drinking too much. I wasn’t constantly drunk, because you have to live your life but over a six-month period it wasn’t just one bottle a night, it could sometimes be three or four and that’s not good. I’d never use the word alcoholic, but I realise I became alcohol dependent.
I hid it by drinking at home because if I had drunk that amount when I went out tongues would have wagged and I can see why. But it’s also more expensive to drink when you go out, you can buy a bottle of wine for the cost of one glass in a pub.
Stamp Out Stigma
My friends and family were aware at times. One friend told me I was living on just satsumas. Others said: ‘You’ve just said that four times’ when I spoke to them on the phone or perhaps I sent a text I shouldn’t have. When my mum came to stay in December 2019 she would often say: ‘You weren’t making any sense’ and I was always falling – that was the start of hepatic encephalopathy, but we didn’t realise. When I was in hospital I was close to death at one point and my mum was watching me slip away. Since I improved, joined the British Liver Trust and heard other people’s stories I soon realized I wasn’t on my own. Indeed, if it can happen to me the way it did, it can happen to anybody.
Stigma comes at you from every angle and can be quite aggressive
Everybody knows someone with an alcohol-related issue and their situation may not be that pleasant, so you’re put into that box immediately. Stigma is horrible and a lot of it stems from ignorance – it comes at you from every angle and can be quite aggressive. It has a terrible mental effect because it stays in your mind. I used to walk with a stick and people would ask: ‘Have you had a stroke or a new hip?’ I just said it was a brain-related condition and they would change the subject.
Stigma affects family and friends too. My friend said there’s only a couple of people she feels she could tell because the others would judge straight away. She told one person that I have a liver problem and their first question was ‘Is it alcohol related?’ It must be terrible for those who have liver disease that isn’t.
The most common form of stigma is people saying it’s self-inflicted and you should control yourself, such as ‘You poured it down your neck, nobody sat on your chest and forced you’. I also get ‘So you’re on benefits because you drank too much…’
I’m strong enough now to say ‘I understand what you’re saying, but let me tell you my story, which is not unique’. That takes the wind out of their sails. I’m a decent family man who experienced some trauma and used alcohol to relax, found that wasn’t enough and wanted more until I became dependent. To the outside world you’re still that same functioning person, but when you turn your key into your house that’s when your life turns to a complete mess. I couldn’t cope with what was going on inside my mind and the only way to deal with it was to block everything out. Some people eat, shop or gamble. I drank.
There’s also the ignorant, flippant form of stigma where people say: ‘We’re meeting up at the pub, but that’s no good to you, is it?’ When that was said to me I felt belittled and hurt. It’s the same as saying ‘I’d give you a cake but you’re dieting and want to lose weight’.
I don’t mind going into an alcohol environment – when I was out with a friend recently she asked if I minded her having a glass of wine, but in a way that wasn’t patronizing. I said of course I didn’t and there we were, sitting in her garden at midnight, she with a cigarette in one hand and a glass of wine in the other, me with a cup of tea. How things have changed!
Friendships suffered too. I had three colleagues, one I’d known for 25 years and other two for 20 years and I’ve probably had half a dozen phone calls from them since I was in hospital – over two-and-a-half years ago. None of them made any attempt to visit me. Two said: ‘We rang you but you weren’t very coherent and it worried me because you didn’t sound like yourself.’ It’s like they got together and came up with the same excuse.
The one I was very close to blanked me and I’ve never understood that. I used to speak to him two or three times a day at one point, but then he was gone overnight. It still hurts me greatly because if that had been me I would have rung.
The barrier goes up because they assume I’m a monster or I’ve been a monster
Trying to develop a new relationship has been a disaster. They’ll ask if I work and I say no because of my condition, and then straight away the barrier goes up because they assume I’m a monster or I’ve been a monster. Or they say my brother, husband or whoever was like that... Or you sound like a lovely bloke, but … One person said ‘I’ll think about it’ like I was a piece of furniture at DFS. I never assumed it would be an issue to the point it has been, so now I just don’t bother. Anyone who knows me knows I’m a decent fella and good fun to be with.
Thankfully I’ve met so many more people on this journey who are nicer and more genuine and I realise I’m not alone, particularly within the British Liver Trust.
Where I live people have generally been nice because they’ve seen me progressing and looking better. I’ve never given a sob story to anyone, but I’ve told more people I’ve got to know. Sometimes I see the expression in their faces and I’m waiting for the reaction the next time I see them.
I know I’m only ever one drink from disaster, but I haven’t had a drink for more than two-and-a-half years. I’ve found lots of different ways to fill my time with people who accept me for who I am.
All I can do is live every day as best I can, being the best son, dad, daft granddad Stevie and friend I can be. Rest assured, I will always continue to do what I can to put the message across and reduce the stigma related to liver diseases, whether it be alcohol or non-alcohol related. Thank you for letting me share my story and taking the time to read it.
Read more about Steve's experience The emotional side of liver disease