Love Disfigure is an initiative born out of a need to raise awareness and support for those living with disfigurement. Founded by swimmer and swim teacher Sylvia Mac, who at the age of 48 dared to bare her scars for the first time. Sylvia’s advocacy is having a positive impact in a variety of areas, including setting up fortnightly swimming sessions for anyone with disfigurement. Thank you Sylvia for sharing your story (and for your entry to the Women’s Adventure Expo #swimselfie competition!)
When I was 7 years old, my father subscribed myself and my sisters into the local swimming club. I was happy at first until I realised that the other children were staring at me and whispering. Before long, I was being called names such as ‘snakeskin’, ‘witch’ and ‘disgusting’.
My elder sister managed to put a stop to it before it got worse. Because of this incident, I began to plan my route into and out of the swimming pool. When swimming began, I was the last person to leave the changing room and enter the pool. When our Coach called us out of the water, I would hide and pretend I had a stitch or cramp. I became quite popular with my Coach as the child who complained about everything. Little did he know, I was being bullied by the other swimmers, my team mates.
As my swimming improved my father entered me and my sister into League competitions and galas. I remember picking new swim costumes and they were all so revealing. I wouldn’t dare wear a costume with the big cut out hole in the back as this would only make my problems worse. I asked my mum for a big beach towel so my sister could wait at the end of a race with it ready to cover me up from everyone. My sister was my saviour as I never complained to anyone else about my problems. I remember one occasion swimming in a big competition at Crystal Palace leisure centre. At the end of my race, I couldn’t see my sister and became anxious in the water. I remember hearing the officials shouting and whistling at me to climb out of the water. I decided to ignore them and stay in the pool believing my sister would appear very soon. My sister never came until someone shouted over the speaker for me to get out of the pool. I swam under all the lanes to the other side of the pool and quickly ran to the changing room where I locked myself into a locker room. I stayed there until I heard my sister calling me. I was crying and screaming at her but she apologised as she had won her race prior to mine and was celebrating with her friends outside.
I never won any of my races because I didn’t want to draw attention to myself so ‘pulled back’ during races. I wouldn’t dare ‘place’ in a swim competition because the thought of me being on a rostrum gave me anxiety attacks thinking about everyone staring at me.
As I got older, I realised I wasn’t able to complete exams in school, college or university which meant I wouldn’t be able to achieve anything great in my life. I remember always attending interviews but when I arrived outside I would turn around and go back home. I always lied to my family telling them I did really well but lacking confidence and low self- esteem was always going to stop me in my tracks. I eventually went on to do office work which was never my thing and I was always shy around people worrying how long it would be before they sacked me.
I went on to work in schools with children as I always felt comfortable with them until one day I took them swimming with the teacher. When I arrived, I noticed 2 ladies working there that I use to swim with many years ago. They asked me if I wanted to come and teach swimming with them so I immediately took swim teacher courses and taught non-swimmer schoolchildren. I enjoyed my work so much that I then took on more work in the evenings teaching Adults to swim. I enjoyed teaching people to swim so much that I did extra evenings with special need children. Some years later I took another course in swim coaching and went on to work with a local swimming club teaching/coaching competitive swimmers. I worked in the club for a year until I began having problems with my back so had to give up work.
When I was aged 3 years old, I was severely disfigured in boiling water from an accident at home. My sister was running with me through the house and we were told not to go into the bathroom as my mum had boiled saucepans of water and poured into bowls on the floor for our bath. We lived in a council flat in the East End of London and often ran out of gas and electric so my mum filled the bath for all 5 of my sisters to bathe. I almost died twice from my injuries but was lucky to pull through life support to tell my story today.
Last year July 2016 I went on holiday with my mother and son. Whilst laying around the pool sunbathing a man was videoing me and followed me back and forth. This made me extremely sad and upset that my mum decided we should go to the beach instead. We went up to our room and I put on a beautiful bikini which I would never think of wearing but was bought for me. We made our way to the beach and I could see my mum was very sad as she often stared at my burns and questioned if they hurt me. As I stared at her staring at me, I could feel her sadness so began walking down to the water’s edge. As I was walking I could feel everyone’s eyes on me and turned around to face my mum. I called out to her ‘mum, look at me’ and I began to smile and pose as if I was being photographed. I noticed her face change and she began smiling back at me. I went over to her and said, ‘mum from now on, when people photograph or video me, I will smile and pose then at least I will look great on youtube’.
In October 2016, I released my own video on youtube and bared my scars. Aged now 49 years old, I decided I want to change my life and stop spending my days crying and hiding away so began a FB group called Love Disfigure. I raise awareness and show support for people living with a disfigurement by blogging on my website lovedisfigure.com and sharing beautiful photos of myself and my scars.
I recently released a story to BBC News called ‘my scar and me’ which was surprisingly released online BBC World News. I then went onto release an audio interview on BBC Radio 4 Woman’s Hour which can be found on BBC IPlayer. I will continue campaigning for those affected by their appearance whether scars, burns, marks, skin condition or health conditions. There are thousands of people around the world who continue to suffer with anxiety, depression, low self-esteem and PTSD and send me heartfelt messages. When I released my story, many of my friends didn’t know I was burned but only myself and my family knew. It was my choice to keep this to myself as many people continue to do every day in fear of being cast out. We need to let these people know that we are all unique and different in many ways. Do not let life pass you by as I did. I have wasted my life because I had no confidence in myself and my skin.
Today I can finally say ‘I am Beautiful, we are all Beautiful’.
A Lotus Rises is on a mission to increase visibility, access and participation of women in swimming. Our first collaborative workshop is at the Women’s Adventure Expo on 7th October. Whether you’re returning to the pool, learning to swim or embarking on the English Channel we will be exploring all that open water has to offer with insights from across our women’s swimming collective and scientific contributions from the international institute of swim cake studies.