Stav and Despina’s story
Since meeting through CLAPA’s Adult Voices Facebook group two years ago, Stav and Despina have formed a formidable, powerful friendship. We are honoured to share their beautiful story this Awareness Week, so have a read below.
Stav’s Story:
When I joined the CLAPA Adult Voices Facebook group a few years back, I was looking for some inclusion in the world. Having never met a person with a cleft before (apart from at my appointments when growing up) it was refreshing to begin engaging with other adults who had gone through similar struggles and challenges on their journeys.
One sunny day in Cyprus I received a friend request from a girl who I had never engaged with in the group, however I had seen her profile post a few times. She had sent me a direct message reaching out and hoping to share our experiences. As this was the first time I had been approached by someone to discuss and share life experiences about living with a cleft, it was something new, but I was open to meeting. Particularly as our messaging had a succinct flow, I could sense we shared the same core values, as well as the same humour and most importantly the same taste in TV shows! To meet someone with the same culture as me (a Greek-Cypriot background) was eye opening as I had never met anyone of the same heritage with the condition. It was refreshing to talk with someone who knew the ordeal from first hand experiences, as well as discovering that our personalities were so similar.
To meet someone with the same culture as me (a Greek-Cypriot background) was eye opening as I had never met anyone of the same heritage with the condition. It was refreshing to talk with someone who knew the ordeal from first hand experiences, as well as discovering that our personalities were so similar.
After a few weeks of discussions and messaging back and forth, we had arranged a meet up in Cyprus once she had a few weeks off from her degree in the UK to fly home. We arranged a coffee meeting (the most popular pastime for Greeks of course) which enabled an informal meeting in public. I was nervous to meet her, as you never know if someone will be shy or unwilling to open up in person than via text. Eventually, we sat down at a popular coffee chain shop, began talking and sharing our experiences, worries, past operations etc. This conversation was possibly the first true and in depth discussion I had ever had with someone who went through the same experience. We sat there for half the afternoon sharing stories about our childhood, the highs and lows in life, what wass next in our cleft journeys. It was like meeting a friend I knew over many years, but for the first time! I never expected to meet someone with such a kind soul; from that moment I knew she would be a friend for life.
This conversation was possibly the first true and in depth discussion I had ever had with someone who went through the same experience. We sat there for half the afternoon sharing stories about our childhood, the highs and lows in life, what was next in our cleft journeys.
Once I moved back to the UK we would speak weekly, giving eachother life updates and meeting up when we could. In meeting someone with such similar circumstances and worries in life, it gave me a new meaning. We have both helped each other through some tough moments these past few years and we will continue to be supportive for one another. I am grateful for the era we live in which makes connecting with people so easy via online platforms, as it’s important to know you are not alone in this world. To know there is a community of ‘Clefties’ waiting to support one another through any issues, finding an appointment or discussing operations and what to expect with the aftermath, is truly beautiful. To be able to give the confidence I have found in myself to others is my number one goal in life. Without an organisation like CLAPA we would never have known each other and this is why I support the charity with all my heart. Helping people of all ages to feel less alone and more inclusive in society!
Despina’s Story
Being born and raised in a closed community like Cyprus, where looks are perceived as important, I grew up feeling different and judged based on my cleft. As a result, I was never comfortable speaking about anything that had to do with my cleft journey, except with parents and even this was bringing me to tears. Not even my close friends knew anything about this part of my life. They obviously knew I was different and loved me for who I was, but they did not know much else.
Before moving to the UK for my studies I had never met anyone with cleft and, in all honesty, I was not comfortable being in the same room with someone who had the same “problem” as me. You see, I always felt my cleft lip was a problem throughout life.
My positive experience in the UK as an adult having a cleft made me curious about how many people out there are born with cleft lip and/or palate and how they felt about their condition. This curiosity led me to join the CLAPA Adult Voices Facebook group a few years back. One day while scrolling the messages in the CLAPA page, I saw a post from a girl who had a rather characteristic Greek-Cypriot name and I decided to drop her a message and a friend request. Meeting someone with a cleft, even virtually, was a big thing for me and the fact that most probably she was a Greek-Cypriot like me, made this awkwardness feel a bit better.
Meeting someone with a cleft, even virtually, was a big thing for me and the fact that most probably she was a Greek-Cypriot like me, made this awkwardness feel a bit better.
Instantly when we started exchanging messages, I felt I had known her forever. I admired how open she was about her cleft lip and palate and how comfortable she made me feel to speak to her about my experience as well. Although I was very scared of meeting her in person, because I did not know how the meeting would make me feel, we finally met in a mall in Cyprus. The feeling of speaking to someone about a part of myself which I kept “a secret” from everyone was liberating. We exchanged stories about our surgeries and other parts of our cleft journey and I felt for the first time I could speak to someone without hiding pieces of myself.
The feeling of speaking to someone about a part of myself which I kept “a secret” from everyone was liberating. We exchanged stories about our surgeries and other parts of our cleft journey and I felt for the first time I could speak to someone without hiding pieces of myself.
We have kept in touch ever since! She (and her family) are a second family to me and she will always be a part of my life. Interacting with her and seeing how open she was about her cleft lip and palate, in addition to seeing how many people on the CLAPA Facebook page were speaking about their experiences, made me realise I wanted to change. Keeping my cleft journey “a secret” felt more like a burden rather than a protection mechanism at this stage.
She is always there for me as I am for her, and with her kind soul and heart she has supported me through this journey of my “come out” about my cleft lip. CLAPA has helped me to meet a beautiful person who I think of as family, as well as other beautiful people who I share similar experiences and worries. Volunteering with CLAPA and being able to help the cleft community has also contributed to understanding and accepting myself more and speaking about my condition without feeling embarrassed or being judged. I feel very lucky to be part of the CLAPA community since being part of it helped me grow as a person and find a new balance in my life!
Volunteering with CLAPA and being able to help the cleft community has also contributed to understanding and accepting myself more and speaking about my condition without feeling embarrassed or being judged.
