Rosie has autoimmune hepatitis and lives on the Isle of Lewis in Scotland. She describes her experience of living with a liver condition away from the mainland and how British Liver Trust support groups have helped her.
I thought I was Superwoman.
I live on the Isle of Lewis; we are a tight-knit community and I feel very lucky. I think you can feel more isolated and lonely in a city than we do here on our island. But when you are ill it’s certainly more of a challenge. We have a hospital in Stornoway, but if we need to see a specialist we have to wait for them to come and visit from the mainland, and in an emergency we rely on the air ambulance to take us to Queen Elizabeth Hospital in Glasgow – and I’ve made that trip a few times in my life.
In November 2016 I went to my GP because of what seemed to be a skin condition. I was itching all over, my skin was broken from scratching so much, and on top of that my joints were really, really painful. It got so bad with my knees that I couldn’t walk, and my hands hurt so much I couldn’t dress myself. At first I was diagnosed with dermatomyostitis and given steroids. This treatment continued, until 18 months later, after one of the regular check-ups, my GP rang me and said ‘Stop taking your medication immediately’.
Routine blood tests had shown that my liver function was deteriorating, and possibly had been for some time. That was scary. I was fortunate that a visiting locum to Stornoway was a retired professor of hepatology and he agreed to see me. He immediately suspected that I had autoimmune hepatitis – known as AIH, a rare condition where the immune system starts attacking the liver. This was serious and things started to happen quickly.
I was sent to Raigmore Hospital in Inverness for a liver biopsy – a journey that involves setting off from home at 5am, and staying overnight. The results came back, and I was diagnosed with AIH. I truly believe that my diagnosis came just in time, and that I had been at real risk of developing cirrhosis of the liver if it had gone on much longer.
I was put under the care of consultant Dr Andrea Broad, a Gastroenterologist for the Highlands and Islands region, and liver nurse Michelle. They have been fantastic. But I have had to accept that my life is never going to be the same again.
The thing that no-one understands is the fatigue. If you haven’t had it you just don’t know. It’s not tiredness. Even I didn’t accept it at the start. I thought I was Superwoman. If I had a good day, I went hell for leather. Then I found out that I would be wiped out for three days afterwards. I wouldn’t believe it, feeling sure I would ‘get better’.
The biggest hurdle is accepting the situation mentally. That you aren’t Superwoman; that this is real, it is your new life and you can’t fight it. When you accept that, then you can stop beating yourself up and start to look after yourself.
As many have, I began working from home this year, while self-isolating to protect myself from Covid-19. It has actually been better for me than going into the office, where I got worn out simply from getting ready and travelling to work. Now I can take breaks when I need to. My boss is supportive about helping me work from home after the pandemic is over – but I will miss seeing my colleagues.
Over time I’ve realised I’m better in the morning. I also know that by 5pm I am done. By then my joints are aching from head to toe, I am shattered, and I will just need to sit and shut everything out. And that’s every day. Which means no going out for dinner, or seeing friends in the evening. That’s another aspect of my life that I’m coming to terms with.
"It's changed my whole life"
Autoimmune hepatitis has changed my whole life; my home life, my working life and my social life. It’s a lot to cope with.
I try to stay positive, to be chirpy and cheery, and when people ask me how I am, I say I’m fine even when I’m not. You could explain how you feel to a best friend, your closest best pal, but they still wouldn’t truly know how you feel. Sometimes it wears you out just trying to stay cheery!
Before my diagnosis I hadn’t even heard of autoimmune hepatitis – hardly anyone has, so I certainly didn’t know anyone else with it. The only person I could really turn to was the liver nurse Michelle in Raigmore. She is so enthusiastic that she can actually make you feel better with her positive mental attitude.
It was Michelle who called to tell me about the new online support group, set up during Covid-19, run by the British Liver Trust, just for people in the Highlands and Islands with autoimmune hepatitis. She said I think this group will be ideal for you. I said – sign me up straight away!
As the group meeting came around, I was a bit apprehensive. Did I want to share my experiences with people who are strangers to me? But I needn’t have worried. There were five others at the first meeting and we just understood each other straight away!
It is so refreshing to find a place where you don’t have to say you are fine. You can say – this is a tough day, I am struggling. The other people in the group already know exactly how you are feeling. I can ask, does anyone else feel like this, or someone will say, have you had these symptoms – and I will say – yes! And it’s such a relief to know that it’s not all in your head; that you aren’t losing yourself.
I like that the people in the group are local to me, even though there is still significant distance between us – we all attend the same hospital and know some of the same healthcare professionals. It makes you feel part of a community.
The group is run by Amy from the British Liver Trust; she puts you at ease and brings so much knowledge to the group. I have learnt so much from her about how to look after myself and my liver. When someone in the group is down, she suggests coping strategies. And we all rally round as a group to look out for each other.
I find myself looking forward to the next meeting. I already know that these groups will continue online, even after the pandemic is over. They are already so important to us. It will be nice one day to meet other members of the group face to face, but for now I just feel really lucky to have found this support without having to leave home!