The woman in the lift looked like she was going to hurl. Shuffling unconsciously from one foot to another, head down, her chin was pressed so firmly towards her chest it was practically burrowing into her thick black jumper. I had a good guess as to why she was so anxious. I looked back a couple of times to check if she was still following me down the road – she was – and I knew I was right.
We were both headed to the First International Conference on Body Dysmorphic Disorder (BDD), an extremely debilitating mental health condition where sufferers believe they are unbearably ugly and are compulsively preoccupied with their appearance concern.
BDD is extremely common (more common than anorexia and schizophrenia combined in fact!) and extremely devastating for the person with the BDD but also for their loved ones to deal with. A person with BDD can feel their appearance is so shameful that they do some or all of these things:
- conceal the ‘defective’ body part with excessive makeup, clothing, hairstyles, accessories
- miss attendance to or completely stop going to school or work
- spend excessive amounts of time examining their ‘flaw’ in the mirror, measuring, touching or photographing it (maybe 12+ hours a day in some cases!)
- avoid being photographed or looking in mirrors altogether
- spend excessive amounts of time researching cosmetic treatments or strategies to ‘fix’ the flaw
- have cosmetic treatments/ surgery (which rarely helps, often the BDD sufferer thinks they look worse after surgery)
- repeatedly seeking assurance or confirmation about a body part ‘does my nose look big? Do I look okay? See how disgusting I look!’
- be unable to concentrate on anything but their flaw
- avoid seeing friends and family
- struggle with maintaining intimate relationships or avoid them completely
- avoid certain activities they used to partake in
- abuse drugs or alcohol to cope
- be unable to leave the house
- self harm, have thoughts of suicide or even end their own life
BDD is not about vanity. People with BDD just want to ‘look normal’ and not see the ‘monster in the mirror’ any longer.
Any part of the body can be the object of concern. Some with BDD fixate on one part, but many have several perceived flaws. The area/s of concern might change over time for example someone may be worried about their nose and then also become afraid of wrinkles around their eyes.BDD is not something you are born with or a product of the media. A combination of genetic factors, negative experiences such as teasing/ bullying and other environmental factors are likely to play a part in its development but BDD is not anybody’s fault.BDD can often be dismissed or not taken seriously but BDD is a clinically recognised and potentially severe disorder, not something a person can just ‘get over’. Yet although the person is clearly in extreme distress about their perceived flaw, to everyone else the person looks normal! How can this be? The person with BDD has a distorted body image – they can’t see the same as everyone else sees. The woman in the lift? She looked completely unremarkable – there was nothing about her appearance that was unusual or ugly at all, in fact I thought she was quite pretty!
Anyone of any age, culture or gender can develop BDD and indeed the room was filled with diversity: male and female, young and old, a range of ethnicities, shapes and sizes. There was no way except for the huge BDDF logo projected on the screen and our welcome packs in our laps that a stranger would guess why we were all here.
Some came in groups: families, partners, friends keen to support their loved ones, but many came alone – a brave step for anyone with BDD to take. Some people were visibly uncomfortable being there but with reassuring smiles and patience I managed to engage with so many wonderful people and share our stories. Some may not have left the house maybe for weeks or even months before this event – it might have been the hardest thing they did all year. Parents came on behalf of their children, professionals on behalf of their patients.We were all there for different reasons but our cause was united: to understand Body Dysmorphia and to tell the world our story.
One of the misconceptions about BDD is that it is a female disorder but actually the statistics (and the demographic at the conference) show that the gender distribution is about even. One of the first people that I met at the conference was an attractive young man with a particular form of BDD called muscle dysmorphia, a subtype of BDD where sufferers believe they are insufficiently muscular. One of the workshops – Male Concerns – touched on this form of the illness which affects more men than women and can be difficult to distinguish from ‘normal bodybuilding’ where extreme appearance related anxiety is absent but the individual still strives to grow bigger/stronger and follows a strict lifestyle to achieve this. It seemed incredible to me that he saw himself as too small and skinny when he has a rather enviable physique and can deadlift more than three times my bodyweight! Sadly that is the reality about BDD – though other people can’t see their flaw, to them it is very real. Fascinatingly, Dr Katherine Phillips, the keynote speaker, mentioned that studies have found that people with BDD actually process visual imagery differently, tending to focus on small details and showing impairment in processing the ‘big picture’ – this might help to explain why some BDD sufferers are so convinced they are right and anyone telling them they look okay must be lying!
Throughout the day we attended a series of workshops with such topics as medication to treat BDD, compulsive skin picking and how to get good therapy as well as speeches from experts treating the disorder and inspirational talks from those who have successfully recovered.
Never on one day have I heard so many stories of pain, struggle and adversity, but also of courage, strength and hope. Some of us understood our condition and came to see what we could do, to support others and spread the message, whilst others were still learning – unsure whether they themselves or a loved one had BDD. Many were at a loss as to what to do to deal with the condition.
Sadly, some common themes with BDD are that sufferers are reluctant to seek help or don’t know there is a name for their condition. I didn’t know when I was four and I tried to ‘cut the fat’ off my stomach with scissors or when I felt physically nauseated looking in the mirror in the school bathrooms. When seeing any photograph of myself made me cry I just thought I was ugly and I should get over it. But I couldn’t. I can now recognise that I had BBD symptoms intermittently for most of my life.
Even when I worked out I had BDD it wasn’t easy to explain. One of my closest friends recently admitted when I first told her she just thought I had an eating disorder as that was the only illness she was aware of related to body image. You can see how these factors make seeking treatment a challenge. Many with BDD are misdiagnosed as they are afraid to admit the ‘real problem’ that they think they are grossly unattractive and often get labelled with other diagnoses like social anxiety or depression. On top of this, because awareness and funding for BDD is so very low actually getting help even when you know what’s wrong can be hard. Mental health waiting times can be atrocious. It personally took me the best part of a year to see a psychologist – even though I was unable to work and suicidal I was put on a SSRI and anti-anxiety medication and sent away*. I was even told I wasn’t poorly enough to be referred to the specialist program for BDD in Maudsley hospital London (the only facility of its kind in the UK) which has changed the lives of many BDD sufferers I have met. Help is out there and there are some excellent CBT courses for BDD but it can be so difficult to access for some and it shouldn’t be! One in fifty of us is going through this private hell and some GPs don’t even know the condition exists! I felt so much empathy when one woman spoke about her eleven year old daughter who had been waiting a year for help already and had dropped out of school because of her BDD – even at my secondary school I know of people who did the same because their BDD was so severe.
*SSRIs can help control BDD symptoms enormously and are the main pharmaceutical used for BDD.
BDD can take away years of the sufferer’s life, trapped at home with crippling anxiety. What really overwhelmed me at the conference was how much untapped potential there is within the BDD community – so many of these people that were or had been unable to do such simple tasks as leave their house actually had an impressive plethora of talents: writers, tech whizzes, film makers, artists, scientists, athletes. In the CBT workshop run by Rob Willson, chair of the BDD foundation, Rob reminded us all to bring our thoughts back to these qualities we had before BDD came knocking – were we generous, funny, playful, honest, driven? How could we use these qualities and play to our strengths, channeling our energy away from out anxieties and towards the other things that make us who we are – it’s very easy for a person with BDD to lose their identity and part of recovery is about finding that again. Many people came in skeptical that CBT could cure them of what they believed was an appearance problem. David Veale in the Male Concerns workshop presented the idea of Theory A and Theory B – Theory A being that the body dysmorphic initially believes is that they have a physical problem that needs to be fixed. But what if we work assuming theory B is true? That the problem is a body image issue and an internal problem. How does that change how we approach it and how we behave? Rob applied this idea to how people with BDD often interpret ambiguous stimuli – for example if they walked past a group of children laughing they might assume that they were laughing at the person with BDD’s flaw when in fact there are a range of other explanations – perhaps someone just told a joke! I know I often took negative behaviour towards myself and blamed it on my appearance – ‘the reason they weren’t nice to me is because I am too ugly’.
This video has recently been released by the BDD Foundation and will feature on TV within the next week I believe. At the conference we were shown the Video
was made with some clever green screen work (they didn’t actually film anything on the underground) which was pretty cool! Please, please share it with everyone you know!
Another video exhibited at the conference that provides an excellent insight into BDD is Leigh De Vrie’s short film called Exposure: My Broken Reality with BDD. With the help of a makeup artist one side of Leigh’s face was transformed to show how she sees herself. The discrepancy between the ‘normal’ side of her face and the BDD side is remarkable! Yet the cosmetically constructed side is how Leigh actually sees herself! The film is a moving representation of how perception and reality blur in BDD and the viewer can empathise with her distress – when Leigh wears the mask some people really do stare and her accompanying narrative takes us through her painful thought processes. The film is both haunting and unapologetically honest. Check Mybrokenreality for details!
The sad truth is we still know so little about a disorder that affects so many. During the day I spoke to many people with inspiring stories of hope and recovery but also to desperate patients and their families that want nothing more than to be free of their BDD demons and to be able to live a normal life. Near the end of the conference in a heartbreaking admission one lady confessed to the audience that her grandson had just declared his intent to take his own life that very day. I sincerely hope that he found help before it was too late.
Tears were shed yesterday but there were also smiles. When I spotted that there were not one, not two, but three mirrors in the bathroom, instead of getting stuck in one of them like I might have a year ago I pointed out the irony and we all laughed.
There are many phrases that say life begins at different ages: At adulthood, 30, 40, 50, 60… but everyone in the room on Saturday knew a different truth – Life begins after BDD. Those that have recovered from BDD have gone on to live rich, fulfilling lives and the message of Saturday was never give up hope.
Although I am by no means cured I have come a long way. Just a year ago there would be no way I could have been sat in that lecture theatre with so many attractive people around me (even if they don’t see themselves that way). My fear of my own body was so intense I only left my house sometimes to exercise. I didn’t sit down at all, EVER, because I was terrified of my own legs and how they spread out – looking at them made me scream. I would have buried my head in my hair and avoided everyone because I couldn’t bear the shame of being looked at and judged. I was hideous. I didn’t look like me. I was not living in the right body. One of the speakers at conference said something that really struck a chord with me – that she wished she could have been transgender because then at least there would be something she could do to make her appearance the way she wanted it to be. The comparison between the two conditions is certainly not to belittle the suffering of living with gender dysphoria, certainly transgender individuals can go through hell and for someone to have considered their plight is as difficult as that of someone wanting to change gender I think says something about how distressing BDD also is. I have also heard of sufferers saying they would prefer to have a terminal illness than BDD because there is less isolation and stigma. I wouldn’t wish BDD on my worst enemy.
The inner turmoil that would have made the conference impossible for me last year is still there but it is muted now – like a radio that has been tuned out of station. Some people with BDD never really silence that inner dialogue that tells us we are ugly, disgusting, monstrous but we learn to fight it, to challenge it and eventually it grows weak enough to ignore ‘BDD FM’.
BDD robbed me of my identity – I went from an ambitious high-achiever to feeling to feeling like I was a worthless failure too ugly to live. Throughout my BDD I clung to my hopes and dreams. I will know my BDD is cured the day I will be able to stand in front of a camera and tell the world my story and I won’t be afraid of what the viewers might see.
I think the conference was a brilliant start to raise awareness of our condition and I really feel that a supportive community is beginning to form – sufferers and our families are finding our strengths in numbers. One day our support groups won’t be few and far between. Our healthcare providers will know about our condition, how to treat it, and that treatment will be delivered quickly and effectively. We won’t have to explain ourselves to our families and friends because the letters BDD will be as well known as ‘anxiety’ ‘depression’ or ‘cancer’.
In the wise words of one audience member:
‘We are the lucky ones; we know what the problem is. Thousands out there still don’t know.’