I was diagnosed with autoimmune hepatitis and cirrhosis when I was 20 years old. With a diagnosis of lupus a year earlier, I had already been plunged headfirst into the world of NHS department bingo and butterfly needles, but nothing prepared me for being told I already had liver scarring and might need a liver transplant in the future.
I had no symptoms of liver disease other than infrequent periods, hair loss, and some spider veins on my arms. When I visited the GP about these various issues, nobody raised the possibility of liver damage. It wasn’t until a routine blood test for my lupus flagged an elevated liver enzyme that I was sent for a liver ultrasound and then a biopsy.
Being diagnosed with AIH and cirrhosis at a young age was bewildering. I felt alienated amongst my peers, who were finishing university and pursuing their careers without much thought about their health. There was nobody who I knew going through similar health problems of such a serious nature. I began to doubt my body; how could I appear so healthy on the outside, whilst everything was going wrong internally?
This sense of isolation and insecurity continued to some extent throughout my early twenties, when I experienced repeated flares of AIH. As I started immunosuppressive medication, my hair began falling out much more and I ended up having to wear wigs. Aged 25, I suffered an esophageal bleed and was placed on a variceal banding programme to avoid reoccurence.
As I’ve grown up, I’ve realised that there’s no part of my life that liver disease doesn’t impact.
Around this time, I had something of a mindset shift. I considered myself very lucky to have survived a bleed and despite having a period of decompensated cirrhosis, I was able to recover back to being compensated. I realised that life cannot be taken for granted, and I made a commitment to make the most of each day whilst I am healthy enough to do so.
AIH has opened so many doors for me. I have volunteered with the British Liver Trust for many years now, and am part of the Patient Advisory Group (PAG) who provide opinions on key issues impacting the charity’s work. I’ve also been lucky enough to volunteer as a patient representative on various research projects to improve the quality of life for liver disease patients. During COVID, the Trust established a Young Persons’ Zoom meeting. It was so helpful to be able to chat to others with similar experiences to mine, particularly when most of us were shielding.
As I’ve grown up, I’ve realised that there’s no part of my life that liver disease doesn’t impact. Besides the medical fun and games – the fatigue, infections, banding and bruises – there is a really big impact on relationships (how to mention on a first date that you might need a transplant?), career choices (will I be able to work remotely if I’m fatigued?), and body image (despite its ugly thread veins, moonfaced cheeks and bloated stretch marks, I think my body is truly amazing). When I turned thirty, I was told that it would be incredibly risky and unlikely for me to become pregnant in my current state – and I couldn’t have IVF, either. This was another turning point, and I felt very sad for many months.
As part of processing this, I decided to write a book (‘Get Well Soon’, available on my website www.kirstymills.org) about my experiences with chronic illness to raise awareness of autoimmune conditions and also to reduce stigma around liver disease. It’s the book I wish I could have read when I was 20 and scared about my new diagnosis. Liver disease is not fun, and it’s not pretty, but it’s also been the making of me as a person, and I’m grateful for what it has taught me.
