My name is Phoebe, I am 16 and I was born with a giant CMN on my face and satellites all over my body. The process to remove my facial nevus began when I was one week old and finished when I was six. I have a skin grafted face and over 500 satellite Nevi. My biggest flex is saying my eyelids where once behind my ears! Most of my surgeries were performed in New Zealand, as I lived there until I was eight. I am currently studying A levels and am working towards my Young Ambassador’s Award with Caring Matters Now.
I’ve always been aware I was mildly different to other kids. When I was about 4, mum helped me devise a series of comebacks for curious or rude people. So no matter what someone said I had an answer prepared and this was very empowering. I never felt I was any more unique physically than my best friend with her ginger hair! I’ve never let my skin condition hold me back from doing what I wanted. I love playing netball and lacrosse and if I could live in the sea, I would.
My mum let me dress myself from a young age (terrible idea by the way as I have no fashion sense) so I’ve pretty much always worn what I wanted. Growing up in sunny New Zealand meant I mostly wore shorts and t-shirts, a style I have not deviated from since. It’s still my go to weekend attire, how many of my satellites are on show really is of no consideration. In fact, at school I always see how long I can go in socks with my school skirt before succumbing to the cold and putting on tights. That of course doesn’t mean I’m not sun smart; I always slap on sun screen and a rash vest when I’m on holiday, but if I can get away with just a bikini post 4pm, I most definitely will :).
Speaking of swimwear, I have to say the most stares I ever have are at the beach or waterparks, but what can you do when you’re apparently the most interesting thing to look at in a 30-minute queue for a water slide. I developed my own dictionary of disses and facial expressions in response to ‘starers’. However, with age I realised the majority of people are just curious, with no malicious intent, even if their mouth is open wide like a fly trap. Now I couldn’t really care less about the occasional onlooker; prolonged eye-contact is often enough to deter them from their gawking.
My family have definitely played a major role in developing my confidence. They’ve taught me that I am so much more than my visual difference. Of course, I have the normal appearance/ confidence hang-ups that most teenagers have, but I have always been pretty confident within myself.
I would really like to help anyone with CMN to accept themselves and have enough confidence to not let their Nevus hold them back. If I had any advice for anybody struggling with their appearance, I would tell them that you should only value the opinion of those you regard. I think that if anybody is ignorant or close-minded enough to discriminate or be disrespectful over a physical difference, then they simply aren’t worth a second thought.
Caring Matters Now has definitely helped to embed my confidence and I’ve both enjoyed and benefited from my time with the charity. I have been apart of both Caring Matters Now and Nevus Support Australia and I think they provide amazing support for CMN wearers and their families.