‘A year ago, I probably wouldn’t have met you,” explains Sylvia Mac. “I would have said I would, and then made up an excuse.” She shakes her head. “I was forever making excuses just so I didn’t meet people.”
After suffering severe third and fourth degree burns to her back and other parts of her body at the age of three, Sylvia, 49, had spent her life covering up her scars and thinking up ways to avoid situations. Her confidence destroyed by years of hurtful comments and thinly disguised stares, at her lowest she had considered ending her own life. “I didn’t really know what depression was. I didn’t realise my mental health was being affected – I just thought this was a physical thing.”
The accident that left her scarred happened during a childhood game of hide and seek with her sister. Power cuts, or the electricity running out, were frequent occurrences in the east-London council flat in which she lived with her parents and four sisters: “My mum used to boil pots of water on the stove and put them on the bathroom floor so that we’d have hot water.” Her mother had told her and her siblings not to go into the bathroom. But, disobeying, Sylvia hid in the room and, when her sister pushed open the door, Sylvia fell backwards into the recently boiled water.
“It was pandemonium. Everyone was screaming,” says Sylvia. She was taken to the local hospital first, but it didn’t treat burns, so she was rushed to Mount Vernon specialist burns hospital in Middlesex and put into a medically induced coma. “They told my family I wouldn’t survive.” She did, but then a bout of pneumonia followed, putting her back in intensive care. It would take years of surgery, skin grafts and hospital visits before she could go back to school, for year six.
A life of covering herself up and hiding from attention followed, until a turning point in July last year. Sylvia was on holiday with her mother when she sensed a man’s cameraphone following her around the hotel pool. She and her mother left for the beach, but she was struck by the effect the encounter had on her mother. “I could see her staring at my scars. She just looked so sad.” So Sylvia started to deliberately pose, calling out to her mum to make her smile.
“I had been in such a bad place before. I was so negative, I attacked my family. I was in such a horrible place for so many years. I looked back and felt like I’d destroyed my family’s lives and I thought, now is the time for me to stop.”
Sylvia felt it was time not just to make a change for herself, but to help others with disfigurements and to raise awareness. She set up a Facebook group, Love Disfigure, and now runs fortnightly swimming sessions at Highbury pool in Islington, north London, with the aim of helping boost the confidence of people with disfigurements or skin and health conditions.
As a child, Syvia herself swam competively, but had a mixed relationship with swimming clubs. She suffered bullying and name-calling while training and would purposefully underperform so as not to garner extra attention. She would also have her sister waiting by the side of the pool with a towel so she could cover herself up as soon as she got out. But the act of swimming itself had a therapeutic effect. “When I was in the water and swimming, I was happy,” she recalls.
Her swimming scheme now has the backing of former Olympic swimmer Sharon Davies – Sylvia’s own idol as a child: “I wish I’d known Sylvia all those years ago, when she often deliberately came fourth to avoid attention,” says Davies. “I could have been the shoulder she is offering others now.”
The recent film Wonder, based on a novel about a child with Treacher Collins syndrome – a rare genetic condition that affects the development of the bones and tissues of the face – has helped boost awareness around disfigurement, but Sylvia points out that the conversation has a long way to go in the public sphere. She particularly wants more positive role models to come forward and talk about their own experiences, especially in schools. “I want children to know that they do have support,” she says. “Not to let their disfigurement hold them back. If we don’t target children now in schools, they’ll end up how I was.”
She points to the pressure on children – and adults – to look a certain way, which has been exacerbated by social media. “Every person is unique. We should all accept our bodies the way they look. Stop trying to compare yourself to other people, or you’ll be doing that for the rest of your life.” She has recently been organising a swimwear photoshoot featuring models with a variety of disfigurements, disabilities and skin conditions and wants people, and brands, to see what it truly means to be inclusive.
The spate of recent acid attacks has particularly concerned her. “It’s an important time to be raising awareness of disfigurement and talk about it because people are being facially or bodily disfigured and it can take away their life, just like that.”
For Sylvia, the last year has been transformative. Having hidden her body, and had depression, anxiety and post-traumatic stress disorder, she now hopes her story will inspire others. “I’m lucky to be here today. I’m proud of my scars. I’m a survivor.”
