FIGURE OF LOVE
HOW DOES LIVING WITH A DISFIGUREMENT IMPACT YOUR LIFE? TWO WOMEN SHARE THEIR STORIES
Living and loving with a disfigurement
Sylvia Mac was four years old when she fell backwards into a bowl of boiling water during a game of hide-and-seek with her sisters, resulting in third- and fourth- degree burns across her back and other parts of her body. Her injuries were so severe, Sylvia was put into a medically induced coma, and doctors told her parents she wouldn’t make it through the night. A priest was called, and she was given her last rites.
Thankfully, Sylvia did make it through the night, but that was only the start of a painful road to recovery. She endured countless surgeries and procedures, and had skin grafts taken from just about every part of her body. She spent many months in a mixed hospital ward, confronted with “sights no child should endure”. Years of nightmares followed.
Her family were extremely supportive, especially one of her sisters, says Sylvia, but she never received any counselling, and because of that, and a severe lack of self- esteem, she says her choices in life were limited dramatically. “I think I had the potential to be an Olympic swimmer,” she says. “But I’d talk myself into not winning because I thought if I did, I’d have to stand up in my costume on the rostrum and I didn’t want to do that. I always made sure I lost places, and pulled back, so I could never win.”
Sylvia’s scars were deeper than the physical. As an adult, she battled anxiety, depression and post-traumatic stress disorder, all stemming from the accident, and self-medicated with alcohol. While she describes a happy home life, finding work was tough, and just as she had self-sabotaged her chances of being a swimming champion, she’d arrive at a job interview but wouldn’t have the confidence to go through with it. “I’d go all the way, I’d be ready and dressed up, but turn around, go home and say it went really well. I didn’t have the confidence to better my life in any way, and I was always lying to my family.”
It wasn’t until last year, at the age of 47, that Sylvia spoke about her burns for the first time. With the help of her cousin, she filmed a video and posted it on Youtube. “At the end [of the video], I show my scars. Because my burns were bodily and not facial, many people who knew me didn’t know, so when they saw the video they were quite shocked.”
Talking about her burns changed something in Sylvia, and was the first step to regaining her confidence. “It was almost like I was becoming myself again. I felt like I’d taken off this coat and I was free. It was as if I was a different person. I’d gone from being totally negative to the complete opposite.” Almost over night, things that used to really upset her – like being
stared at on the beach on holiday – felt manageable. “Sometimes people laugh and take videos and pictures. Now, if they’re going to film me, I’m going to make sure I look good,” Sylvia laughs. “I smile at them, pose a little.”
She’s not alone. More than one million people in the UK have a disfigurement to their face and/or body, including burns, birth conditions such as cleft lips/palates, and skin conditions like psoriasis and vitiligo.
Leighanne Baird-sangster, 38, has extensive syringoma on the majority of her body. “It’s a blockage of the sweat glands which manifests itself in benign tumours across my skin,” she explains. “I would say 70% of my skin is impacted by it, but it’s worst on my neck and underarms.”
Lesions started appearing on Leighanne when she was nine years old. While not painful, there’s no cure and the condition has affected her confidence. She has undergone a series of procedures, including electrolysis and carbon dioxide laser, with another booked in next month. “There’s nothing to say that it’s going to work, but it’s a different form of electrolysis which has been proven to have a positive impact,” she says.
In school, Leighanne recalls there were “the usual taunts”, but it was going out on the scene that was particularly difficult. “That wasn’t [the fault] of the community – I didn’t have any negative experiences on the scene, but I felt I had to cover it up for my own self- esteem.” She often felt nervous meeting new people, and found it frustrating when they would “talk to [her] neck”. “When that happens, I tend to jokingly say ‘have I got something on my neck?’ and then people will either get embarrassed or look away. I do get a lot of ‘ I wouldn’t have noticed if you hadn’t of said’, but I don’t know how much I believe that.” She’s tried various things to avoid drawing attention to her condition, including growing her hair, and using camouflage makeup at her wedding three years ago. “That was a really positive experience,” Leighanne says. “I wouldn’t want to cover it completely, and I don’t feel I should have to, but it was really good to have that kind of support on a special occasion.”
Body image and appearance is a hot topic – particularly so in the LGBTI community – and in a world where mainstream beauty standards idealise slim, white, able-bodied, normative bodies, queer people with disfigurements and disabilities often feel particularly excluded. Rehana Browne, communications officer at Changing Faces, a UK disfigurement charity, told DIVA: “Around 15% of respondents to our recent survey [Disfigurement in the UK] identified as LGBTI, and more than three quarters were women, so we know these issues apply equally to bi women and lesbians. Unrealistic expectations placed on body image and appearance can be heightened in the LGBTI community where there is even higher expectations and demands.”
Changing attitudes towards disfigurement in the LGBTI community takes a commitment on the part of individuals and organisations, something which Browne believes is happening, slowly but surely. “We were delighted when Pride In London and Edinburgh Pride signed the Face Equality Pledge earlier this year, committing their organisations and events to treat everyone equally, regardless of their appearance. We’d love to see more organisations and companies in the LGBTI world take the same, inclusive approach.”
Sylvia and Leighanne have both learned to live with their disfigurements – thanks largely to the unwavering support of their families and help from Changing Faces. But not everyone is as fortunate. Sylvia explains: “I get messages from people on Facebook who say they’re not getting the help they need, or it’s too far away from where they live. There’s a lady in the Midlands I know, all she wants is a friend. So while I’m still here and I’m alive, I’m going to try and do all that I can to help make things happen by showing support, raising awareness and reaching out to as many people as I can.”
For her, that has meant setting up Love Disfigure, a way to share her story, raise awareness and inspire others with disfigurement. The message? “Don’t live your life the way I lived mine. You can get out of it and you can change your life.” A year on, Sylvia’s been contacted by hundreds of people – clear evidence of how valuable peer support is for people with disfigurement. And Leighanne agrees: “It’s nice to find someone who is going through [the same]. You might not find someone who has exactly what you have – and I never have – but similar situations. Reach out – it’s amazing what support is there.”
Love Disfigure Day takes place on 7 September, see lovedisfigure.com. Find out more about Changing Faces at changingfaces.org.uk.
“I don’t want to cover it completely, and I don’t feel I should have to”
Leighanne Baird-sangster (left) with her wife. Below: Sylvia Mac