Kitty Wallace remembers very clearly the first time she felt there was something horribly wrong with her face.
She was eight years old, in her downstairs bathroom with a friend as they washed their hands before dinner. “I just remember looking at our reflection and thinking how different I looked to her,” she says. “At that moment, I had this very strong feeling that my face was offensive or disfigured compared with hers, and then a sudden realisation that this must be as obvious to everyone else as it was to me.”
This belief in the “wrongness” of her own face grew stronger and stronger. By the time Wallace reached her teens, it was all she thought about, along with an acute paranoia about public humiliation.
“The fear of people noticing how deformed I was, of being made fun of, was overwhelming,” she says. “It was like everyone was looking at me and judging me.”
What Wallace didn’t know at the time was that she was suffering from body dysmorphic disorder (BDD), a condition that causes a debilitating preoccupation with perceived defects in your appearance, often causing crippling self-consciousness and fear of social rejection.
Wallace is now one of the UK’s leading campaigners for BDD, using her own battle to raise awareness of this often misunderstood and still largely hidden illness. The Body Dysmorphic Disorder Foundation (BDDF), for which Wallace now works, says there could be hundreds of thousands of undiagnosed cases across the UK. “One study estimates that BDD affects about 2.2% of the population, which is about 1 in 50 people,” says Wallace.
She says that, despite celebrities including Billie Eilish, Robert Pattinson and Shirley Manson talking openly about their struggles with BDD, “there’s still barely any recognition or real understanding of what this condition is among health professionals. People just aren’t getting the help or treatment that they need. Most people suffer for 10-15 years before they get a diagnosis.”
In her job now, as the BDDF’s head of operations, Wallace is constantly in contact with people who have BDD and sees her story reflected in their struggles.
“For me, it was an overwhelming belief that there was something wrong with the very core of who I was, inside and out, and that is really isolating,” she says. “At the BDDF, a lot of our work is trying to show people that they’re not alone and it’s not their fault.”
As the charity’s main staff member, Wallace not only fundraises, organises events and manages the website, she also facilitates support groups and organises a biannual national BDD conference.
“I was still really struggling in 2016, which was when I went to the first BDD conference as an attender,” she says. “And then the next time they ran the conference in 2019, I was organising it!”
Wallace remembers feeling a huge sense of compassion and empathy for everyone who was brave enough to attend. She was 19 when she was diagnosed. “I just think of how different my life could have been if I’d known earlier. All those years I lost to BDD and how it’s still affecting my life now. Nobody should have to go through that.”
One of the biggest problems, she says, is that BDD typically manifests in late childhood or early adolescence, around the time of puberty when many people are going through emotional and physical upheavals. “So it’s often just dismissed as a phase or misdiagnosed as anxiety or depression,” she says. “Even though I have really supportive family and friends, people just expected me to grow out of it, which left my BDD to run wild and completely control my life.”
Looking back, she now sees the signs were always there. Even as a very small child she always struggled with acute anxiety. “I never remember feeling naturally comfortable or secure in myself, or safe in the world,” she says. She also exhibited many tendencies associated with obsessive compulsive disorder (OCD) that she now recognises as signposts to her BDD.
“I remember being very young and being obsessed with my clothes being clean – even the slightest mark would mean I’d have to change. I had this really strong feeling that if I spilled something down myself, people would think I was dirty and disgusting.”
By the time she was sent to an all-girls boarding school at the age of 12, her BDD had already taken control. “I was already fixated on my face, and I had acne, short hair and glasses. In what was a really image-obsessed environment, it made me the focus of a lot of attention,” she says. “There were constant comments on my appearance and how I needed to change or improve. It was confirmation that I had to find ways to make myself, and my face specifically, acceptable.”
Soon, Wallace engaged in multiple lengthy makeup sessions every day. She would get up at 5am every morning and spend two hours on her makeup before she was able to leave her room and go down to breakfast.
“I’d eat breakfast really quickly, run back up to my room to check my makeup, go to class, go back to my room to check my makeup, always checking, checking, checking that I’d managed to hide how disgusting my face was. I couldn’t let it slip for a minute. It was exhausting and I was desperately lonely.”
Over the years, her BDD shifted focus from her hair to her skin, to individual features on her face. “As well as spending hours on makeup routines, I became obsessed with hair washing, then checking my skin to make sure there were no blemishes,” she says. “I was constantly picking at my skin, which a lot of people with BDD do; everything had to be smooth and perfect. The idea of a whitehead on my face was torture.”
Wallace’s nose became an acute source of fear and shame. “I would think all day about when I could have a nose job, how that was the only thing that would make me normal. I grew a long fringe that was my security blanket and I hid behind it for years, trying to cover as much of my face from public view as possible.”
Wallace finished school, but says that many students with BDD drop out of education altogether. One study found that almost 60% of young people between 12 and 18 years old with a diagnosis of BDD were either not attending school at all or attending only sporadically.
Wallace also points to a study that estimates the risk of suicide among those with the condition is 45 times higher than the national average. She says that she has felt suicidal at points and that if it hadn’t been for the support of her family she doubts she would have survived.
“We’ve lost so many people because GPs, health practitioners and teachers simply don’t know what BDD is,” she says. “There are virtually no treatment programmes available, yet BDD leads to suicide, depression and self-harm. Many people alter their faces through multiple cosmetic surgeries and get acute anxiety, which means they lead very limited and painful lives.”
When Wallace first heard about BDD, she had finished school and was living “in self-imposed seclusion” at her family home while her friends took gap years and attended universities across the country. Then, her twin brother got a call. A friend had seen a documentary about BDD. “He said: ‘I think this is what’s wrong with your sister,’ so my whole family watched it and there was a collective ‘Oh my God, this is Kitty’ moment,” she says.
Her mother found the BDDF online. When Wallace visited the website she says it wasn’t much more than a landing page, but it did have a BDD symptom checklist and when she read it she felt “like someone had crawled inside my brain and written down everything they could find. The idea that what I had was a condition, that it wasn’t my fault, was like a huge weight disappearing from my shoulders. For years, I’d blamed myself for everything.”
Wallace checked in to the Priory which, at that time, ran one of the only specialist BDD clinics in the country. She was subsequently referred to Dr Rob Wilson, a specialist cognitive behavioural therapist working on BDD and the co-founder of the BDDF, for counselling.
“At the beginning, going into treatment was really tough but soon I was having these huge moments. I clipped my fringe back off my face for the first time and was able to walk down the street without believing that everyone was staring at me,” she says. “It was a slow release from the grip that BDD had held over me since childhood.”
It hasn’t been a straight line towards recovery. At 28, Wallace relapsed after she developed dermatitis, which caused her face to break out in an angry red rash. “I didn’t leave the house for six months,” she says. “I totally gave up. I wouldn’t even sit in the back garden in case the neighbours saw me.”
She returned to counselling and, during one of her sessions, Wilson told her that most of the BDDF’s funding came from In Memoriam donations from families who had lost children to the condition. “It just made me so angry to realise that my life could be worth more when I was dead than when I was alive,” she says. “I suddenly felt that I owed it to the people who hadn’t made it to get involved and try to change things, so that others didn’t die needlessly.”
Wallace started volunteering at the BDDF and, three years on, became its first paid staff member. Since she started working at the foundation she has managed to secure lottery funding to launch a dedicated email helpline, which has helped hundreds of people with BDD get help and treatment. She has also revamped the website and has seen the number of annual visitors more than double, with 500,000 this year alone. “Seeing the numbers go up is hugely gratifying because you know that people will now be able to understand what’s happening to them. But it’s also frustrating because we’re a small charity and we’re struggling to cope with the numbers asking for help,” she says.
Prior to lockdown, she co-facilitated monthly face-to-face support sessions, which brought people with BDD together for group counselling. When the pandemic hit, they stopped meeting in person but quickly realised that their community was struggling and launched weekly online sessions. “When we went online, the numbers just boomed,” she said. “We had people from Norway, the US, India, Italy; people in their teens all the way up to their 70s.”
She says that facilitating these groups is one of the most rewarding parts of her job. “Sometimes, the people in our groups have never met anyone else with the same condition. You get to see that person change when they realise that they’re in a safe place and that they don’t need to apologise or explain their behaviour, they can just talk and be themselves. There is no judgment.”
She says that things are worse for young people with BDD now, compared with when she was growing up: “Now, there is a relentless barrage of images of people looking flawless on social media, with no transparency about how much these [pictures] have been airbrushed or filtered.”
Earlier this year, Wallace helped launch a partnership between the BDDF and the fashion brand Monki , lobbying for EU legislation that would see brands and social media users legally required to put a notice on advertising or social media posts that had been altered or filtered. Since it was launched three weeks ago, their petition has been signed by more than 30,000 people.
“The campaign with Monki is so important because it gets awareness of BDD out to a huge number of people and this could save lives,” she says. “We’re still a small charity and we’re dealing with such a huge problem, but there is also so much hope for people with BDD if they get the right help.”
It is this hope that keeps Wallace fighting. “Even though my BDD is still with me, I’ve got a great job and I’m getting married next year – these things seemed impossible even a few years ago. I just want people with BDD to know that they can get better and that they’re not alone.”
The BDDF website is bddfoundation.org and more information about their petition calling for social media image transparency can be found here.
In the UK and Ireland, Samaritans can be contacted on 116 123 or by emailing jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org.
