Liz reached out to the British Liver Trust's support groups and called the Nurse-led helpline when she was diagnosed with non-alcohol related fatty liver disease. She found them inspiring and motivating and has now made some big and positive changes to her life. Thank you for sharing your story, Liz
I’ve never been a drinker and always cooked from scratch, but I was overweight and not taking enough regular exercise. I was burned out in my job as a social worker and found it very hard to relax. It was easier to cope with the stress by having a bag of sweets or a packet of biscuits than to talk about it. I talked about going swimming three times a week, but it was an unrealistic target so it fell by the wayside.
I’d had upper quadrant pain for a couple of years as well as feeling tired and lethargic, but I downplayed it. I was working and caring for my mum who had dementia and my daughter who has MS, so I was really busy.
After my mum died I went to my GP because I was finding it harder to ignore the aches and pains. My Mum had had oesophageal cancer, but liver problems were really what brought about her demise – her increasing confusion, weight loss and fatigue had been down to liver metastases. My GP referred me for lots of blood tests which showed things weren’t right, so I was sent for a FibroScan and referred to a liver specialist. The liver clinic had originally resisted the need to investigate my symptoms but my GP had insisted.
Before I saw the consultant I was sent a letter with my FibroScan scores which meant absolutely nothing and there was no timescale on an appointment with him. In the meantime, I Googled the information in the letter and worked out that I had fatty liver disease.
Cirrhosis with no treatment
It would be three months before I finally saw the consultant and I asked him what the letter meant. He said: “You’ve got a lot of scarring in your liver which means it doesn’t function so well.” He told me it was cirrhosis – I wasn’t expecting that at all – and there was no treatment. I had to lose a bit of weight, do a bit more exercise, drink coffee and not touch alcohol. I would be called back for another scan, but that was basically it. It sounded really simple but it’s not.
I felt very bewildered by it all and was worried about the stigma I would experience, but I knew I had to take it seriously because I didn’t want to die. That’s when I found the British Liver Trust. I pored over the patient stories and videos and found it really valuable to know how people felt about their diagnosis, what had led to it, and how they were dealing with it and I kept looking for more stories and re-reading/re-watching them.
I also joined the Trust’s NAFLD support group. The group members came from up and down the country and appeared quite bewildered by their diagnoses too. We were all in our own little homes, coping in our own way and there seemed to be postcode lottery in ongoing monitoring and the support and understanding available.
One member said he’d got a medal for doing a virtual walk from Land’s End to John O’Groats. I thought that was amazing and such a good way to hold yourself accountable so signed up to do it too. I completed the 1,084 miles in 6 months through a combination of walking and indoor cycling and am now 24% (virtually) along Hadrian’s Wall. You get digital postcards of where you are on the walk – sometimes I’ve been outside a supermarket, other times somewhere more interesting. I go wild swimming now too. Starting with a cold dipping group in January wasn’t sensible but it’s been good and I do that once a week. I’ve been out in the early morning and at sunset for the equinox and the experience is different every time.
On rainy days I go on my static bike in the house – I can cycle ten miles in half an hour.
By the time I saw my consultant again I had lost some weight and a scan showed my liver was functioning quite well and there hadn't been any deterioration
I’ve also been looking at ways to relax and started learning Italian and Scottish Gaelic through Duolingo – it’s fun and better than reaching for a packet of crisps. I also do photography and take my camera out when I go for a walk. I look around me and take close-up pictures of things like lichen on a tree or dew drops and I look at them afterwards to remind me that that was a nice walk and it encourages me to go out again.
By the time I saw my consultant again a couple of months later I had lost some weight. A scan showed my liver was functioning quite well and there hadn’t been any deterioration. That encouraged me to continue as I have been, but I haven’t had any medical contact since and that lack of support is a problem.
Losing weight is difficult. Food is still my first go to when I’m stressed and I’m stressed a lot of the time. I started counselling to look at my role and responsibilities in life and to not take everything on. When you have a background in the caring profession there tends to be an arrogance – I know what I need to do, so I just have to do it, I don’t need any help. But I do, everyone does and I phone the British Liver Trust’s Nurse-led helpline to talk through some of that. 
I’ve reflected on what has got me here and I think a lot of it was down to leading a stressful life, all my responsibilities and not looking after myself. I’m now retired and work for a friend who has a disability once a week and look after my daughter. I’ve also joined a carer’s organization. They run an art session once a month and I lose myself in that. Making time for myself to do that at home is a work in progress.
Groups are 'inspiring'
I’ve made some big changes, but it’s not all Pollyanna. I still have bad days when I don’t look after myself very well, feel nauseous and lethargic and have abdominal pain. What do you do on those days? Nobody has the answer.
I’ve been quite open about my diagnosis my with friends, because there shouldn’t be stigma. Everyone assumes liver disease is self-inflicted, but you’re coping with a serious condition and don’t need people’s judgement. I’ve also told my daughters so they can take the preventative measures I have and protect themselves in the future.
I would encourage people to sign up for the Trust’s support groups. They’re inspiring, motivating, help break down the mystique around liver disease and reduce the sense of isolation. Talking with people who are going through the same thing as yourself is cathartic and there is no judgement. You can say the diagnosis is rubbish and you don’t like it or talk about the changes you’ve made and what you’re doing to sustain them.
I would also encourage people to call the Trust’s Nurse-led helpline. Being diagnosed is a huge responsibility, because if you feel you’ve caused your illness, it’s also in your hands to sort it. That’s an awful lot for one person. There’s help available so take as much as you can and be as lateral as you can in terms of looking after yourself. I wouldn’t have thought learning languages would do anything for my liver, but it’s just a fun thing and you need to have some fun in your life and not take things so seriously. My friend has also agreed to help me learn the ukelele. I’m just learning two chords at the moment - but it’s a start!
