It’s wonderful to see how many of the children and young people we support decide that they would like to make a career in healthcare and Megan, now 22, is one such example. Diagnosed with cirrhosis of the liver due to an unknown cause just before her tenth birthday, she is currently in the third year of her medical degree at University of Manchester. She tells her story here.
Like many children with a rare liver disease, my diagnosis followed months of being unwell, having no idea why, and undergoing lots of tests, so to get a diagnosis was a relief. We finally had an answer to all of our questions and uncertainty. The doctors compared my liver to ‘an alcoholic’s liver’ and for me as a ten-year-old I couldn’t grasp the stark reality of this; I think it hurt my parents more than it did me. I was always a very inquisitive child, so I was then told by the doctors that a healthy liver got rid of all the ‘bad things’ in your blood and my liver was having a hard time to do that, so I needed to take medication to help it. This made a lot of sense to me and helped me a lot in adjusting to taking medicines for the rest of my life.
Around the time I was diagnosed, it was also explained that a liver transplant was likely in the future, and I think this worried my parents and family much more than it did me. Children are so resilient. You only have to spend a little time in a children’s hospital to be inspired by their ‘get on with it’ attitude. Besides, the doctors also said that I would hopefully make it to 18 before needing one. As a 10-year-old, 18 was so far away that I didn’t want to think about it, I was still a child, I couldn’t comprehend life as a teenager never mind nearly a decade away. As it turned out I’ve made it to 22 and still not needed one!
As luck would have it on the very day I was diagnosed with liver disease, I met Rachel Quinney-Mee , also from Northern Ireland and her daughter, Lucia who was a similar age to me. Meeting Rachel and Lucia was something I will be eternally grateful for as from that moment on I knew I would never be alone in my journey with liver disease. They told us about Children’s Liver Disease Foundation and how they could provide information to my family, my school and myself in a way which was understandable and not so daunting following my initial diagnosis.
When I was a bit older I attended a weekend trip organised by CLDF with other kids in a similar position to mine and despite the fact they all lived in a different country to me, it was the first time I felt ‘normal’ in a group of people my own age and inspired to not let this condition become my identity.
One advantage of being diagnosed at a young age is that none of my peers had started to drink alcohol. It was explained clearly to me that I needed to do everything possible to keep myself and my liver healthy and that obviously didn’t include drinking alcohol. At the time I was not of the age to be tempted by it and then once my friends began to drink alcohol, they were all very cautious and protective of me, but they also didn’t make a big deal out of it, so I never felt uncomfortable.
When I left home to go to university, I was worried what people would think of me because I didn’t drink and never had. Going to uni is hard enough anyway. You’re in a new place trying to make new friends and I didn’t want to be labelled for something out of my control from the beginning. Again, I was very lucky that the friends I made didn’t make any differences, I was still invited to all the parties, and I had just as much fun as everyone else.
Other than that, health wise I have always been active, but I am also a picky eater, it was particularly bad when I was younger, so I had to take vitamins during my teenage years as I wasn’t getting the nutrients required for a healthy child never mind someone with a chronic health condition.
Now my condition is stable I speak to my consultant every six months – following the pandemic these consultations have all been over the phone. This suits me best as I live in Manchester, but I have kept my care back home in Belfast. When I go home during the academic year, I always organise to have my ultrasounds and bloods taken while I’m in the country; these usually happen every three to four months.
Medicine was not actually my first career choice. Growing up, I wanted to be a vet but one of my consultants told me that due to infectious diseases and my condition I could not work with animals. He is now jokingly referred to in our household as ‘The Dream Crusher’ but in fairness, he did make me think again about what I would like to do, and I switched to humans!I During my first few years of living with liver disease I had many procedures and I was once in hospital close to Christmas, I needed to go to theatre where my anaesthetist was called Dr Dragon. From that moment on I wanted to be an anaesthetist. I was so fascinated by him, his scrub cap, his name and everything he was doing. Curiosity got the better of me and now here I am over 10 years later living out my childhood dream!
Obviously getting here hasn’t all been plain sailing and I would say that fatigue is probably the most difficult aspect of my condition. I find it is the hardest thing to explain to others who have not experienced chronic fatigue, and I hate letting my condition get the better of me but sometimes the tiredness does win.
It is something I struggle with as I hate to believe people might think I’m being lazy. It was most definitely challenging revising for exams, the entire way through my education, as the long hours required can be exhausting – for everyone, not just me, but medicine is something I am so passionate about and I remind myself often of why I want to be a doctor to drive myself through the more challenging times. I find during peak exam season is when I become least well, and I think that is due to stress and the pressure I put on myself to do well. Only recently have I planned in advance for these scenarios so when it comes to exam time I make sure every day I take time to myself to switch off and take a few deep breaths, I also make sure I’m eating well and getting outside to exercise as I know this helps my physical and mental health.
I’m now in my third year of my degree. I took a year out after school before starting my studies at university and I have also resat a year, so I am a year or two behind my peers, but I wouldn’t change a thing about my journey to becoming a doctor. It might have taken me off the beaten track, but I am exactly where I am meant to be, and I love it here. Manchester is a great city for socialising; there is always something to do and someone new to meet. I’ve been extremely fortunate to keep a busy social calendar both here in Manchester and back home in Belfast; since starting uni. I’ve been on holidays, a ski trip, to music festivals, ran a half marathon, got interviewed by the BBC, attended charity events, squeezed in the Miss Northern Ireland competition and even landed myself an award for the most inspirational young woman in Northern Ireland in 2023! It’s been a busy few years but 10 year old me who was afraid of what the future held would be so happy I have not let my silly little liver hold me back.
In terms of what I’d like to do with medicine in the future I would say anything but livers! I’m sorry to all my consultants and nurses who love hepatology but it’s just not for me. The liver is a hard organ to master, way too complicated for me, and I like to be a patient when it comes to my own health. Of course, I probably know more than the average patient that comes into clinic to visit their doctor, but I don’t want to know too much. I would be afraid that I could be scared if I knew too much about the complications or when things go wrong, and it would create some medical anxiety, so for me a slight ignorance is bliss, and I’ll leave my liver to the professionals.
Medicine has so much to offer and there’s a right fit for everyone studying it. Right now, I would like to be a paediatric anaesthetist but who knows where I will end up. I’m right at the beginning of my journey and the opportunities are limitless.
To other young people with a liver condition who have big ambitions my advice is very simple – DO IT! It’s often easy to fall into the rabbit hole of ‘what if?’ When this happens to me, I think ‘but what if it all works out?’ You’ll never know unless you try. I have had many setbacks in life, both personally and academically but I still wake up every morning and try to do a little better than the day before. My mum reminds me of a story when I had my first big surgery and I was due to go on a school trip the week after, she didn’t want to send me in case I got sick or hurt while I was away but the doctor insisted I went as I might never have the opportunity again. It was a harsh reality mum had to accept, she sent me, and I did get somewhat poorly while I was away, but I survived! And I’m so glad she sent me as that was the first step to me achieving the mindset that I have now.
I am incredibly passionate about supporting children and young people to fulfil their dreams, children are so incredibly brave and resilient and they should not be defined by something outside of their control so if I can help them in any way I will always reach out a hand and help them get to where they want to go in life.
