Gemma, who is now 17, was diagnosed with Wilsons Disease when she was seven. However, although she had been to liver clinics regularly, she had never really considered that the other people there were in the same situation as her. In fact, she admits she had never properly engaged with anyone else with a liver condition. Here she explains how the CLDF Weekender helped her overcome this.
I had always struggled to accept that Wilson’s Disease was a part of me, However through some help from my psychiatrist I have over the past year come to terms with this and that sometimes that sucks, but that I am not alone in my experience.
I heard about the Weekender through a leaflet in the post. We had been receiving mail about CLDF for years and I’d never really paid it much attention. But when I read the information and thought that there is a whole community out there who know EXACTLY how I feel, it made it sound really compelling and exciting. Plus, activities such as a mocktail making workshop sounded fun. So I booked on!
As the Weekender approached, I was nervous about the concept of having to literally put myself out there to people I had never met before. But the thought of making new friends and meeting new people overrode that anxiety
And I was proved right – it was a great weekend and I really did enjoy getting to know everyone there. The quiz allowed me to get a feel for people, the workshops let me know how people felt about themselves and was an opportunity to discuss the more challenging parts of having a liver condition. The free time was super as well, as people could just talk to each other about themselves and share really deep emotions- which was totally refreshing. But my favourite part of the weekend was the party- seeing people cut loose but also share really intimate feelings was so exciting.
I regularly keep in touch with people from the weekend. I am currently on two group chats! I have honestly made friends for life and it is not out of obligation that I talk to them, it’s because I genuinely found people I want to get to know more.
As far as my liver condition is concerned, I feel so much more confident in talking about it and I don’t feel the sense of shame about it anymore. It is still hard and there are days when I just think ‘why me?’ But it is a part of me, there must be a reason I have my condition so I might as well accept that and just get on with life. There is much more to me than my condition, but my condition is what influences a lot of who I am.
Everything about the Weekender made me feel more positive about myself and I felt heard and valued. When I told people about my condition it was natural and received with acceptance whereas sometimes when I talk to people who don’t have a liver disease, I feel like I’m making them uncomfortable. This was a time when I felt totally myself, unashamedly and understood.
To find out more about how CLDF can help young people go to https://childliverdisease.org/young-people/.