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It’s all about people making me feel understood

If you’re a young person with a liver condition, you could be forgiven for thinking that you’d only want to contact CLDF if you were having problems at school or needed advice about travelling, but our young people’s service can provide  so much more than that, as best buddies,  Mollie (right), a 20 year old student nurse, and Gemma, 21, a drama student, explain…….

Mollies story

In 2019, I was diagnosed with a liver condition called autoimmune hepatitis and this resulted in me needing a liver transplant shortly after.

I first got involved with CLDF at the start of 2020 when I took part in Talk Tell Transform, a week-long project where we all got to make a film telling our own story. At the time, I was feeling very lonely and wanted to meet other young people with a liver condition. Talk Tell Transform was one of the best weeks of my life. Meeting and spending time with such incredible young people made me feel a lot less lonely, and I was able to share the experiences I had gone through with my liver transplant. Everyone at CLDF was totally accepting of one another and it was no big deal having a liver condition, as we all had this in common.

It was during this week that I met Gemma, she was lively, bubbly and we just seem to click. I knew straight away that Gem had something special about her and wanted to stay in touch once the trip had come to an end.

Since this trip, our friendship has become stronger. Whilst we don’t live close to one another, we chat all the time using facetime, so it feels like we see each other more than we do. And when we do get together, we make it fun – we’ve been to each other’s houses, gone to the theatre and celebrated birthdays together.

Just recently we went London to celebrate Gem turning 21. I planned for us to have afternoon tea on a London bus that took us sightseeing around all the famous London landmarks. It was something a bit different but we both had so much fun!

There is something about meeting new people through CLDF that is so special, and I am so grateful to be part of a charity that sometimes makes me forget about having a transplant as we all feel like a big family. I strongly recommend contacting CLDF, especially if you’re feeling a bit lost and unsure. It  changed my life and made me a much happier person.

Everyone is so friendly, supportive and understanding. Through CLDF, I have found my best friend and there could be someone out there waiting to meet theirs!


Gemma’s story

I’ve been aware of CLDF since I was diagnosed with Wilson’s Disease when I was seven. I knew the charity provided my parents with information but, to be honest, at that point, everything was very overwhelming and the thought of engaging with something that would make me confront what I had just gone through felt just a bit intense. As I grew up and my physical symptoms began to subside, my condition became more about the social implications. I felt quite alone and like no-one understood . And then I received a flyer through my door advertising a weekend away with CLDF. It felt very much like a sign. I signed up and that summer went away to Derby University for my first proper event with CLDF. It was there that I found real community, met people with similar mindsets and I didn’t feel so alone.

I met Mollie the following February at CLDF’s office in Birmingham and I could tell straight away that she was a good egg. A group of us had signed up to take part in CLDF Talk Tell Transform and after sharing a dorm with her for a week, we bonded in a way that I have never bonded with anyone.

Everyone taking part in TTT has a liver story to tell so trust was immediate. We were happy to share our stories with each other but also felt that we didn’t have to. We mainly just giggled and learned things about each other. When we heard about each other’s stories, I definitely understood Mollie in a very different way, but overall it just deepened our friendship and our trust in each other. Mollie definitely knows me in a different way to everyone else in my life and it is the biggest privilege being her friend.

Myself and Mollie generally communicate through social media, usually Snapchat, that way we can send pictures of where we are and what we are doing. We also facetime regularly, something which proved really valuable during lockdown.

For my 21st birthday, Mollie very kindly treated me to afternoon tea on a double-decker bus seeing the sights of London. It was so thoughtful and brilliant fun. Mollie drove down from Tamworth and we travelled in together. We ate some gorgeous food with amazing hot drink options as we took in sights such as Houses of Parliament, Theatre Land and  Kensington Palace. It was amazing.

I met the community of CLDF at a point in my life where, although I knew I had people around me, they did not understand me. For example, my condition means that I can’t drink  alcohol and the social circle that I was in at the time, just didn’t really understand that. They weren’t very sensitive. When I connected with CLDF, I found that actually a lot of people had had similar experiences with friends perhaps underestimating just how much your condition can affect your everyday life. My CLDF friends just get this. For me, it’s all about people making me feel understood and my issues seen. I know have a much higher standard for friendship as a result, which is great because now I can safely say that all of the people that I have in my life fulfil me and make me happy.

I completely understand why getting in touch with CLDF for the first time could feel a bit overwhelming. You may feel that it might make you think differently about yourself and that is totally normal. But I would say just do it. You don’t have to attend every event, every call, respond to every message. But you will find people who get you in a way that other people who don’t have liver conditions don’t. It is hard to accept a liver condition as a part of your identity, but I have learned that actually by embracing it as part of my identity in spaces that are specifically made with your condition in mind, there is freedom in that.

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