'I just don't want to go outside and have people stare at me today' - the truth about living with a visible difference

Rosa Silverman
Feeling proud: Phil Gorf (right) and his son Sam - Jeff Gilbert/The Telegraph

Men in the Gorf family don’t relish discussing their feelings. Phil Gorf, 52, and his son Sam, 22, who enjoy a teasing and affectionate relationship, will cheerfully admit as much. Like many a father and son they have, over the years, been more comfortable glossing over the hard stuff, or pushing it into the background.

But one day this approach ceased to work. It happened about seven years ago, when Phil realised he could no longer keep trucking along as if everything was just fine.

“I knew I was having problems,” he says, as he sits beside Sam in the bar of a hotel in central London. “I wouldn’t say I had a breakdown but things just fell apart. My relationship with [my wife] Helen really suffered. I think Sam suffered as well. I left home and ended up living in a mate’s spare room.”

Leading up to this point was what Phil calls “45 years of pain,” originating in the fact he was born with a birthmark across three quarters of his face. The birthmark also appears on his chest, left arm and right leg. For most of his life, he’s been undergoing hospital treatment on and off, though the pain he’s endured has been emotional far more than physical.

From age 10 onwards he started having polyps, or small lumps, cut off his birthmark. At 12 he had mercury wire inserted into his bottom lip to reduce the bulk size. At 25 he had the first of more than 70 sessions of laser surgery on his face. The surgery is now used to blast the polyps as they start to form.

Just after coming home from his honeymoon, at the age of 28, he spent two weeks in hospital for surgery to reduce the bulk of his bottom lip. Further surgery took place when he was 32, to reduce the bulk in his top lip. And between the ages of 49 and 51 he had injections in his tongue and lips to reduce the bulk.

Meanwhile, from the age of about seven, Phil was mercilessly bullied.

“I changed schools and that’s when it all went horribly wrong,” he says. “Pretty much straight away I was ostracised from the group.”

His peers at his new school near Leighton Buzzard in Bedfordshire levelled verbal abuse and taunts at him with impunity. “Just anything to draw attention to my face, really. I’m not sure if they did it make me feel bad or to make themselves feel better.  I’d describe it as relentless. Every day, every lesson, every break time there’d be someone having a pop.”

But his parents had little idea what he was suffering. “I don’t think they knew I was going through constant abuse. I remember coming home from a school disco once and crying to my mum, saying ‘there were all these people getting off with each other and I’ll never kiss a girl.’”

Beyond this, he barely spoke of it, something he ascribes to embarrassment. He even kept much of the bullying from his wife, who he met in 1993 through a friend of his old boss. “She knew I’d been bullied but we never discussed it. She never knew the extent. I kept it very much inside.”

'Pretty much straight away I was ostracised' says Phil of being bullied at school Credit: Jeff Gilbert/The Telegraph

This, despite the enduring discrimination he encountered in adulthood. For instance, during a job interview at a water company in his early 20s, he was asked the question: “That thing on your face - is that going to get into the water supply?”

A year or two later, attending a job interview at a company that installed television aerials and satellite dishes, the interviewer told him point blank to his face: “I wouldn’t send you out to a customer looking like that.”

His best friend, who worked for the company, took the side of the employer. “I just let it go then, because I knew if I’d let [the issue] continue I’d lose my best friend,” says Phil of his decision to yet again bury the hurt somewhere deep within.

He went on to get married, have a son and find a job at DHL, the logistics company where he currently works. But the hurt and the pain he’d suppressed couldn’t stay buried forever. When it finally caught up with him in his mid-forties, the life that he’d built was suddenly at risk of crumbling into pieces around him.

“I’m not sure what the trigger was,” he reflects, “But I remember thinking, ‘I just do not want to go out in the street and have people stare at me today. I just don’t want it any more.”

For a period of around four to six weeks, he took absence from the family home in Milton Keynes. Sam, then in his mid-teens, did not fully understand all the reasons.

He says: “When I came back from school, me and Dad had a walk for about 45 minutes, and a chat, and he kind of explained what was happening and why he was going to stay with someone for a bit. But at no point during that conversation did the topic of his birthmark come up.”

Because while Phil could talk vaguely about not being happy, he still wasn’t pinpointing the cause. However, by doing some internet research, he came across Changing Faces, which supports people who have a visible difference to the face, hands or body and is one of the Telegraph’s chosen charities in its ongoing fundraising appeal.

“Within a few days I was down [in London] at the [charity’s] office and there were counselling sessions,” he says. “I think I had seven or eights counselling sessions with them. It opened all these boxes and all this nonsense was pouring out. There was all this mess everywhere. So it was kind of a period of sorting out the stuff that had come out of the box, tidying it up and either throwing it in the skip or putting it back tidily in a way that I understand it. But it has taken six or seven years to do that.”

During this period, he has learned, little by little, to open up more to his family as well. “We didn’t really sit down and talk about it at any real level but we would talk about things here and there, gradually, maybe a few sentences each, and it built up,” says Sam, who is now studying medicine at King’s College London. “A few times after [Dad] had spent time with Changing Faces we started talking about it more openly and freely.”

He credits the mutual support his father found in the people he met through the charity with helping him get back on track.

“I think a really big part of [him] coming to terms with it was being able to talk to people who had been through similar things,” says Sam. “And what I saw at those charity [get-togethers] was that talking between people who had gone through the same things was really comfortable because you’re not feeling the odd one out. You’re not the only person who looks a certain way.”

As for Sam, who grew up feeling angry at the way people stared and pointed at his father, it’s clear just how proud of him he feels.

“Massively,” he confirms. “For as long as I can remember everyone has always referred to my dad as a fun guy.” Turning to Phil, he adds: “Everyone who knows you will say without fail ‘he’s a good laugh’. Being able to do stay upbeat and find fun in random things - I think that’s all part of dealing with it.”