Amy’s story

Living with a Liver Disease

I have thought long and hard about posting and writing this, not only because it's so personal but in a sense I am laying myself bare for you all to see. I don't tend to talk about my health at all, I push it to the back of my mind, but it's PSC awareness week, so if I don't write about this now it's likely I never will, and hey everyone has to face up to big things once in a while! PSC stands for primary sclerosing cholangitis: a chronic auto-immune liver disease, and I've had it for 10 years.

Let's take a quick walk through memory lane, back to when I was 13/14 years old and things started to go wrong. Now I don't really remember much about my life at this stage apart from it was the last year of my prep school and first year of my new school; but the thing I remember most is being in constant pain, having no energy and not ever knowing what was wrong. Now let's set the scene: Kenya. Kenya 10 years ago when medicine and hospitals were only starting to come up to scratch. My parents dragged me from doctor to doctor and I spent one term constantly in and out of hospital having tests. The outcome? "She's making it up to skive sports". I will never forget the feeling of dread I had knowing that something was wrong and that no one believed me.

Luckily my mum dragged me to a tropical disease specialist as a last resort, he took one look at my jaundiced (yellowed) skin and told my parents I needed to go straight to England. So off to England I went, and after seeing a world renowned liver specialist I got the diagnosis: primary sclerosing cholangitis (PSC), a chronic, non-alcohol liver disease with no cure and in my state I was given 2 years to live without treatment (a fact I found out much much later - also I'm now, 8 years on from that at 24 so WINNER!!!!). As a fourteen year old I didn't understand what this meant, only when the drugs came did I get that my life would change forever.

Flash forward a couple of years to 16, the prime time a young teenage girl wants to be noticed by boys, go to all the cool parties and start drinking alcohol. Except I wasn't noticed by boys, I was on predinsolone which unfortunately turns your face into what can only be described as a bloated balloon. For that reason alone, I wasn't cool and I wasn't "pretty", and I wasn't skinny (one of the symptoms of PSC is tiredness all the time - so guess who was always picked last for the sports teams??) but I wanted desperately to fit in so I fell into a pretty deep state of denial and thought what's the worst that can happen if I have a cheeky drink now and then? Even though I had a liver disease - go figure.

The few years that followed were not great, my mum tried to get through to me (cheers mum) and most of my other family just didn't understand what was wrong with me. There was no one I could relate to and the doctors were out of their depth, so there seemed to be only one clear answer: boarding School in the UK. The idea behind this was that I would have access to the NHS and wouldn't have to pay for my meds.

Now during this time I wasn't well, I was the same person on the outside, but inside I wasn't great. The weight I had gained was still pretty obvious, my diet wasn't brilliant and I felt like an outsider in a bubble of public school English kids. I'm glad it's behind me.

Whether this state of denial had become a part of my life then or whether I just didn't want to talk about it, I'm not sure. All I know is that at that point, as far as I was concerned my liver disease didn't exist apart from bi-annual trips to see the consultant. Anyway I suddenly found myself at uni, with a bunch of people I didn't know and no way to bond except guessed it - alcohol! I'll admit it I was totally and completely insecure about my illness and how people would look at me if I didn't drink, so I drank and didn't tell anyone about it, I did everything I could to fit in and make friends. And I'm sorry but if any of you are judging me right now - don't you dare, as unless you went through exactly the same thing you have no right. It was only in my third year of uni that I actually started thinking about the long term effects of the diet and lifestyle I had, but even then I pushed it to the back of my mind thinking "I've been fine until now I'll be fine forever".

And then I got ill. Seriously ill. Everything in my life seemed to be going ok, I had moved to London, got a job which paid me well, made new friends and started seeing a new boy. But the job was stressful, too stressful, I wasn't sleeping at all, I was still having the occasional drink and then the inevitable happened I collapsed and got rushed to hospital. Years of me not listening to my body and trying to live as normally as possible had taken their toll and complications caused by PSC took over. 

I'm writing this almost exactly a year on from that incident; and in that time everything has changed. Soon after my collapse my sister, took upon herself to help me accept my disease, and help me realise there is no point in helping my liver get to the point of a transplant, you may only get one liver and that's the one you're born with (This really makes me sound like an alcoholic - I'm not at all, I would like to note that the amount I drank was exactly the same if not slightly less than an average university student and young graduate, the difference is I shouldn't have been drinking anything). I haven't had an alcoholic drink in 10 months now and strangely don't miss it. I still don't talk openly about it though and if people ask me why I'm not drinking I say I'm on a health kick, as its sooo much easier than having to explain. I'm pretty healthy now, I've lost all the weight I gained, run two half marathons despite my constant tiredness (and will be running one next year for PSC support) and am about to abseil down a building to raise funds for my hospital.

I still have the whole "wow you look so well" every time I see an old family friend or extended family member, but instead of me grimacing, now I know they actually mean it. I may well get ill again, I may well need a liver transplant in the future who knows, but that's kind of the reason I wrote this: no one, not even the top liver specialists know much about this rare disease. So at least those of you who read this will have a bit more if an idea of what PSC is and I will have at least done my bit to raise awareness.

So there you go, I have laid myself bare for you guys. It took me 9 years to admit that I needed support and it's taken me a long time to have the courage to write this because in essence this is my vulnerability, it means that certain things in my life need to change. But hey, life would be too boring if you never changed!


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