Tony’s story: “Don’t judge a book by its cover – there’s a story in there somewhere”

When Tony was diagnosed with alcohol-related liver disease, he pushed his family away and his work colleagues would cross the street to avoid him. He describes alcohol as a coping mechanism, saying the person who is alcohol dependent is not a bad person, but simply in a bad place. Thank you for sharing your story with us, Tony 

In 2012 I was a qualified social worker, with a nice job supporting adults with learning disabilities. I was married with two children and comfortable in my life financially, but not in other ways. My marriage broke down and I started to increase my drinking, which led to me losing my job, my social work registration and to not seeing my children. A lot of what brought it on was stress related.  

Initially I went to see my GP who said I needed to cut down my drinking.  A plan was put in place and I self-referred to a local charity. It was limited in the people it could see and finance, but they supported me through a reduction programme and it worked for six months. Then at my own volition I started drinking quite heavily again. There was no follow-up – there was never any follow- up from my hospital appointments or specialist services. 

I went back to the GP surgery and was diagnosed with alcohol related liver disease. I had to read on the internet what that was. Some GPs were really supportive, others were dismissive because of the drinking. Further down the line one said: “If you carry on like this you’re going to die” At best, that was a poor clinical opinion. I felt completely worthless and thought ‘what’s the point’.  

In hospital the nurses were fantastic, but the doctors were a mixed bag. I’d be admitted either because I’d developed ascites or was neglecting myself through not eating and needed a period of detox. The wards were very good, but in A&E I’d hear, “He’s back again” or “I don’t know what you’re doing here, there’s nothing we can do particularly. You just need to stop drinking” as though it’s that simple. It’s not a particularly nice thing to hear in that setting and that would put you off contacting them.  

One particular doctor really supported me, but once when I was on a ward with other people in a similar situation another doctor came in with a nurse and just pointed at the beds saying: “Discharge, discharge, discharge, stay in, stay in, stay in’. That was a much as we got. That stayed long in my mind and as a health and social care professional I thought ‘that’s not good enough’.  

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A healthcare assistant who knew one of my family members said: “You need to stop drinking, you’re ruining your family.” I did report her, but it was her word against mine and I didn’t get anywhere. Would she have said that with another illness? 

“At first I would just be discharged to my GP, but eventually the GP referred me to gastroenterology it was very ‘Are you drinking?’ and then ‘Come back in another year’, but in fairness they did refer me for ultrasounds and endoscopies.  

My condition developed into cirrhosis.  

A leopard never changed its spots

My brother was very supportive initially, but one of the perils of drinking is that I pushed him further away. On my journey to abstinence a cousin I was very close to said: “A leopard never changed its spots.” I asked her what she meant and she said “You know”. 

My best friend then, who is still my best friend now, found it difficult especially when I was in hospital and he saw the weight loss and swollen abdomen. He just couldn’t face it. The majority of my friends pretty much disappeared. In their words I was an alcoholic. I don’t think they saw it as an illness and just thought they couldn’t be doing with me anymore. It was a real blow. I felt isolated, betrayed, let down and degraded and that it was all my own fault, but as time went on I realised it wasn’t.  

My work colleagues would walk past me in the street, which I guess is indirect stigma but it doesn’t feel any less than the direct stuff like when you walk into TESCO and you’re yellow and everyone is looking at you. It’s stigma across the board.  

While I was off work I was also diagnosed with adjustment disorder, so I wasn’t well. My direct team was supportive, but it was a large organisation and I didn’t get any welfare calls, which for a health and social care environment was really disillusioning. At six months I reached the end of my term for full pay and my employers said they wanted to meet with me in the office. I had to get into a taxi when I was not feeling great. I didn’t want to walk through an open plan office either. After I had been there for 15 minutes, they said: ‘We can smell alcohol on you, you’re suspended pending investigation for gross misconduct’. They lacked any empathy, understanding or any wish to understand. It was very process driven, they didn’t look at me as an individual, to listen or support me, I felt as though I was just a number. When I later applied for another job and needed a reference, they stated I was an alcoholic. 

I felt bereft. I wasn’t coping and now had a lot more time to mull things over. My mental health deteriorated to a point where I agreed to an inpatient admission because I could see no way out. It was my own choice not to see my children when I was drinking until I was better, but that on top of everything else… 

The point that stopped me drinking was during my final detoxification in hospital. I was admitted on January 29, 2016 and was hallucinating, I was so scared and thought the people in the hospital were trying to kill me. It was a difficult, difficult time, but I thought ‘What do I need to do? Is it going to change? No, it’s going to get worse. It’s not easy and never will be, but I’ve got to do it for those people who count, including me’.  

I did it in small stages. I accessed an agency who could prescribe acamprosate for my yearnings, and then when my brother started coming back into my life, I felt as though I had achieved something. The longer and further I got the more encouraged I got. Then in June I fell and fractured my lower spine. It worked out as another encouragement for me as I had to stay in hospital for four months with no alcohol. In the end I did get there and I’m still going. There’s no day that it doesn’t cross my mind, but it’s not the problem it was. I’m very conscious of my wellbeing. 

I’m very much trying to keep healthy and keep stresses out of my life, but there’s no guidance

Four years ago I was told by one of the consultants that in between five and ten years’ time I would need a transplant but it was never mentioned again. I’ve asked at numerous outpatient appointments and they just say “We don’t know” or “There’s no plan”. I’m very much trying to keep healthy and keep stresses out of my life, but there’s no guidance.  

Despite being diagnosed with cirrhosis, I only had my first fibroscan six months ago and had to really push for it. The attitude was ‘Why do you need one?’ It’s another case of rather than me being the person with cirrhosis, the drinker. It made me feel crap. 

It would be like me turning up at someone’s door as a social worker and knowing nothing about them, not their name or what’s going on with them. It’s not acceptable, but it’s commonplace in general medicine. The day I make a prejudgement on someone with drug or alcohol-induced illness is the day I give the job up.  

I was well enough to get my social work registration back in 2018. The mental health service was the one service that helped and didn’t judge me, so that’s why I went into mental health crisis. I definitely made the right decision and absolutely love it. It can be anything from people who are bipolar or live with dementia or schizophrenia and need support or clinical intervention.  

“Although I do still have some difficulties with my ex-wife – occasionally she’ll accuse me of drinking again without any substance to that accusation, I’m in a better place to deal with that now. My children are 18 and 14 and old enough to make their own minds up. I have planned visits with them and see them outside of those visits too. That’s the biggest win for me.  

Alcohol is a coping mechanism and alcoholism is an illness like any other and not a particularly nice one. It will become more prevalent in terms of liver disease, because the availability of alcohol is so prevalent, you can buy it 24 hours a day.  

I never thought I would be in that position and it doesn’t make anyone with alcoholism a bad person or less a person, you’re just in a bad place. I would ask people not to judge a book by its cover – there’s a story in there somewhere. Take the time to learn it and don’t be afraid to ask and find out because it is more common than people realise.  

Just be kind. 

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