When the stress of being diagnosed with autoimmune hepatitis began to affect her mental health, Chrissie took solace in meditation which inspired her to take up creative writing and establish a mindful craft group. Now she feels like she has a purpose and a future. Thank you for sharing your story, Chrissie
My journey with autoimmune hepatitis (AIH) started back in February 2022, when some routine blood tests showed that my ALT was in the 800s. I’d had no signs that anything was wrong, so it came as a shock and I had no clue what it meant. Things moved quickly, and it felt very scary to be told that if my eyes started to turn yellow I should to go straight to A&E. I spent most of the weekend looking in the mirror.
I was quickly assigned a consultant, and on my first appointment, he told me I had AIH and wanted to start me on drugs directly. I resisted, as I was in disbelief that I could have such a serious condition. I still had no symptoms, so didn’t believe I was ill. My ALT level was dropping dramatically each time I had a blood test, so I wanted to wait to see if it would come back down on its own. I felt very alone, so searched and found the Facebook group ‘AIH Support UK & Ireland’. Joining this group, gave me some comfort. I wasn’t living this nightmare on my own. It also directed me to the British Liver Trust, which gave me more information. I quickly became very knowledgeable about AIH, and the different drugs used to control it.
I had my first liver biopsy, which turned out to be inconclusive, but as it had been detected early, it showed that there was no damage to my liver. By August 2022, my ALT was refusing to go below 300, so I was told I needed to start on Budesonide, or risk damage to my liver. I reluctantly agreed. It sounds ridiculous now, but when I swallowed that first capsule, I actually sat there waiting for something terrible to happen, but of course nothing did. I’ve always been afraid to take medication, so this was a very scary time for me.
Medication caused fatigue
Having always suffered with mental health problems, this experience was starting to take its toll on me. The drug was causing fatigue, which seriously impacted what I could do. I had to give up certain things that I loved, the hardest being the voluntary work I did mentoring young people. Feeling like my life was over, I decided to seek out a CBT Therapist. Over time she helped me confront my fears, and the mindset I was stuck in, mainly: ‘What was the point of life anymore?’ She introduced me to meditation, to help keep my thoughts in the present moment and to stop me worrying about the ifs and buts of what could happen in the future. During one session, while I was relaying again, all the things I couldn’t do, she took the brave decision to challenge me. She told me to stop thinking about all the things I couldn’t do and focus on what I could do. This shook me a little, but it was exactly what I needed.
I joined a monthly meditation and journaling group. I got more into meditation and also started to journal about my feelings and worries. These both helped me enormously. The lady running the group also recorded monthly podcasts, where she talked about how to cope with life’s challenges. During one podcast she was interviewing a lady who had followed her dreams and changed career. Although I was already retired, I felt inspired. This got me thinking and I came up with a brilliant idea. I could use my love of crafts and meditation and start a little Mindful Craft group of my own in my home. By this time I felt that I could write my own meditations, and use them to help other people. To my surprise, people enjoyed them and they also encouraged me to record them and load them onto a You Tube channel. It’s early days, but my group is still going and I’m writing one or two new meditation pieces a month. I’m loving it, and feel like I have a purpose and a future again.
My ALT level had been stuck at a hundred for some months, refusing to come down any lower on steroids alone, but for some reason my consultant refused to start me on an immunosuppressant.
During this time, I still had further challenges to face, but now felt stronger and more able to fight. Unfortunately, my ALT level had been stuck at a hundred for some months, refusing to come down any lower on steroids alone, but for some reason my consultant refused to start me on an immunosuppressant. I had learnt enough from the Facebook group to know this is normal practice with this condition, so I got a second opinion. This resulted in me finding out my opinion was right, so I asked to change to a consultant that would treat me using an immunosuppressant. Once I started on Azathioprine, my ALT started to reduce again, and in October 2023, it was finally back down in normal range. This meant I could start to wean off the steroids, which in turn reduced the fatigue I was feeling. A celebration indeed!
It's normal to feel overwhelmed
If I had to give advice to someone on this journey, I think I would say that in the beginning it’s normal to feel overwhelmed and lost, but know that it does get easier. Become knowledgeable about your condition. Some consultants are more knowledgeable than others, so don’t be afraid to fight for the treatment you deserve. And know this is not the end. Just keep facing forward and focus on what you can do.
I confess that my life isn’t always positive, as I still face challenges, like still being afraid to travel. But when I find myself focusing on what I can’t do, I have a favourite quote I use.
‘The secret of CHANGE is to focus all of your ENERGY, not on fighting the old, but on BUILDING the NEW!’
I’ve also started writing poetry as well now, and have been told I’m a natural. How did I get to aged 62, and not know I was good at writing!
