Gordon’s story: “I’m keen that things are done right for people with alcohol-related liver disease”

Gordon knew he was drinking too much - it had become a crutch at a time of work-related stress. When he received a very high FibroScan reading he knew he had to act and is now passionate about raising awareness of alcohol disease and the impact that stigma can have on people seeking help. Thank you for sharing your story, Gordon

I work in research relating to alcohol so I knew the 150-200 units a week I was drinking was way more than the government limits. A lot of it was to help me deal with work-related anxiety and stress. When the stress was worse, I would drink more – it was like a crutch.

I went to my GP practice about 10 years ago and saw a very young female doctor who I could open up to. She explained the levels I was drinking were problematic, but crucially she told me not to stop drinking immediately because it could be harmful. She put me on vitamin B and thiamine to reduce any potential damage to the brain and told me to come back to discuss the next steps. However, she was a locum and the next time I went back the GP was an older male who was very rude. He said: ‘You’re fat and you drink too much.’ He wasn’t wrong but he made it clear that I was a problem and didn’t offer any solutions, so I didn’t do anything.

I later went through a period of meeting with an alcohol counsellor, but it was quite ineffectual and focussed more on cutting down rather than giving up alcohol. For example, it was suggested that ‘If you drink eight cans of strong cider, try to reduce it to seven.’ I drank wine and it’s hard to measure it like that. I suppose you could do it in terms of bottles, but once you’ve opened a bottle it seems a shame to waste it. Until all the anxiety and stress were dealt with, I didn’t have the mental and emotional space to deal with the alcohol.

Liver damage not addressed

I have a rare chronic condition called sarcoidosis for which I used to take steroids which made me put on weight and my liver function would always come up high. However, I also started getting unexplained abdominal pain they thought could be kidney stones or diverticulitis but didn’t know for sure. My GP referred me to the assessment unit at the local hospital – they did tests but couldn’t find anything. At one point I went to my GP to try to get medication for a separate condition and he said: “You’ve damaged your liver; I’m not giving you anything.” I was so angry at his rudeness, but looking back now, I am more frustrated that he knew I had liver damage but did not try to do anything to address it.

It was only when I was involved in a colleague’s diabetes research project at work that blood test results came back which suggested I really needed to speak to my doctor. This time, I saw a different GP who was really good and re-ran the blood tests, but he told me over the phone that it indicated cirrhosis – a diagnosis he perhaps did not have enough information to give, or have given within a phone call.

I was referred to gastroenterology/hepatology and while my ultrasound results weren’t that bad, a FibroScan came back very high at 38. Because this all happened during COVID-19 and I think the hospital was quite short-staffed I only saw the nurses who did the FibroScan and the people who did the ultrasounds. I was getting letters from people on behalf of consultants, but never saw one. My GP also referred me to the local alcohol service and I went once or twice but I didn’t find them helpful. I was told I had to sign up for their groups, but I’m quite introverted so I didn’t want to. I soon left and never went back but did manage to stop drinking alcohol completely.

My FibroScan score had gone down, presumably because I had given up alcohol completely

For the first year and a half, I wasn’t actually sure of my diagnosis, but eventually, I was told by a nurse during a telephone call: “You don’t have cirrhosis and we don’t think you ever did”. Around the same time, I received a repeat FibroScan and the score had gone down to 14, presumably because I had given up alcohol completely. I finally got to see a clinical nurse specialist in the autumn of 2023 who said I was more stage 2 liver damage than stage 3 and she thinks my liver will still be improving. If it wasn’t for my other health conditions, she would have taken me off the gastroenterology/ hepatology list.

I’m feeling a lot better now. I’m on a different medication for my sarcoidosis and losing weight which is also helpful for the liver. I can’t rule out that sarcoidosis has affected my liver but that hasn’t been explored because my level of alcohol use was almost certainly the cause.

Emotionally I feel fine too, as the work-related stress has mainly gone. I’m now a trade union rep at work to ensure other people don’t go through what I went through with work-related stress and am getting involved with patient engagement groups for liver, alcohol and mental health which I find very interesting. I am in a job where I do have a voice and want to use it – I’m keen that things are done right for people with alcohol-related liver disease. I recently attended an event in the Westminster Parliament organised by the British Liver Trust where I could describe my lived event to MPs and other parliamentarians. Although I found it nerve-racking, I felt it was useful and I was heartened by the number of MPs who attended.

Liver disease stigma kills 

I teach people about alcohol and drugs in my job and that stigma kills. I try to make sure my students don’t use stigmatising language – the words ‘alcoholic’ or ‘alcoholism’ are stigmatising and don’t mean anything in terms of clinical diagnosis. They give you the opportunity to say: ‘I’m not that bad’, like the old joke that the definition of an alcoholic is someone who drinks more than you. You’re damaging your body and other organs because of your alcohol consumption, but these bogeyman phrases almost give you permission to keep drinking as you are not ‘that bad’, for example needing a drink first thing in the morning.

The power of language and stigma is really important – I strongly believe it’s what stops people from getting help. Healthcare professionals need to take liver disease seriously too, not stigmatise patients, be consistent and ensure people get the help they need if they want it.

(Gordon pictured with Paula Barker MP at the Westminster Parliament event)

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