Diva (UK) - - Contents - WORDS CAR­RIE LYELL

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 loved­is­fig­ Find out more about Chang­ing Faces at chang­ing­

“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

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