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How I cope with the unknown

In a heartfelt and honest account of how biliary atresia has impacted on his life, Louis shares the highs and lows and offers some advice to others in his situation.

Hi everyone! I’m Louis, 21 years old, and I have the chronic liver disease, biliary atresia. I graduated from university this year, so I am now a graduate! Saying that out loud now still sounds just as scary as it did the first time…

I have achieved so much in the 21 years of life I’ve had so far; everything from academia, sports, and other social achievements as well. I’ve done all this with biliary atresia, the liver life is all I have ever known.

From a very young age, I recall visits to Kings College Hospital where I had my life-saving Kasai operation at just two-weeks old. Being in hospital, being looked after for such a serious illness, meant inevitably I was immersed amongst adult-level conversations, and had to adapt to that. To what degree and in what way this was I can’t really remember too well, however I do recall being very aware of the fact that my health required special attention, which is why I was in hospital. I was never scared of hospital though, I actually found Kings quite homely and comforting, which I stand by to this day! I suppose where the real fear resided for me, was within that horrible sense of unknown; what will happen this time? What if I need to stay in for longer? Will the people who saw me last time be there again?

Fear of the unknown

Chronic conditions of all kinds unfortunately do accommodate the unknown rather well. That isolating sensation of not knowing what may happen to me, whether that worry be pertaining to the short term or something much further down the road, has been one of my biggest psychological challenges to overcome with liver disease and for me, it’s been a particular issue over the last six months. In April this year I was told I will need to undergo a liver transplant assessment. Despite knowing we would almost certainly hear this news at some point, that didn’t make the shock or the upset any easier for my family and I. On the way home from the hospital the day we were told, I had countless questions spinning around my head, which all were (at least by us) unanswerable.

I decided to flip the force of the unknown on its head, since I knew if I could tackle that, I would be preventing my own mental health from spiralling away into all kinds of undesirable places. What I mean by this is; we know that chronic conditions accommodate the unknown all too well, so why don’t we just choose not to consider the unknown?

Building a mental resistance against asking those questions isn’t easy, and I should know. It’s hard, it’s a seriously strong force. But you know what? You’re stronger! Of course you are, look at everything you have achieved on your liver journey, and outside this journey too, and now reflect.

The unknown is undesirable for our mental health by anyone’s standards, so in our case we must understand our position. We have a chronic condition which places us at heightened vulnerability when it comes to controlling what occupies our minds.  Many of the things which are unknown to us are only partially knowable to the professionals, which means their word is likely to be a best guess or a predicted possibilities form of answer. So the simple answer is, let’s just not give the unknown access to us! Why worry about what may happen in six months when you’ve yet to deal with today, and tomorrow? Clouding your mind is really one of the worst things we can do for our health. Since adopting this philosophy, I’m happy to report that I have been content in enjoying my day to day activities which I really enjoy! I am proud to say that my headspace has been free  of those unanswerable thoughts or questions, and all forms of self-inflicted guesswork about my health and potential transplantation. I consider that a mental-health triumph. So to any young people who are on their liver journey, hopefully in reading this, your own headspace about your well-being can become cleaner and healthier!

Looking to the future

Currently, I am a teacher looking to begin my PGCE within the next 12 months. In fact I’m teaching in the same secondary school which I went to myself; I’m surprised they took me back! Joking aside, I am really grateful to have the opportunity they’ve given me as a cover supervisor working with Spanish GCSE students and Philosophy classes, allowing me to gain some invaluable classroom experience before I begin my own studies to actually qualify as a teacher!

In April next year, I am running the London Marathon for  Children’s Liver Disease Foundation. I’m a good runner, I love my sport and to be completely honest  I don’t think I’d have had so much sporting success had I not been born in with biliary atresia. If that sounds crazy, let me explain. The awareness I’ve had of my condition, knowing it makes me different, has definitely instilled in me a really potent determination to defy odds, surpass expectations, and at the very least, take part in sports to remain active and healthy. Representing my city at county level football, county cross country running, and training for the London Marathon next year, are just three things I certainly could not have achieved had I been any less determined. I think that proves that so much of what we do and what we think is largely a mental game. I’m sure that my natural capabilities couldn’t have got me this far. It’s been the sense of determination to accomplish and maintain my well-being which so many people take for granted which has undoubtedly been the driving force behind much of my success. In light of this, perhaps chronic conditions can actually serve us in a really positive sense? I certainly think so.

To my liver life pals, be proud of all of your achievements because you’ve had it hard, give yourself a pat on the back after all your accomplishments no matter how small, own your identity and do what is best for you, not what will please or appease others.

Take care all,     Louis

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