Check out this post here: Pregnancy and mental health: the hidden pain of giving birth
A few years ago, I was visiting a friend who has two daughters, a newborn and a two-year-old. Reflecting on his experience of being a father he said that he felt he loved them so much he could “take a bullet for them”. I wept all the way home. If only I could feel that intensely. And here I am, a man who would love to have a child, wondering how I let this happen.
Some people surmise, “It’s different for men. You don’t have a biological clock.” And that’s pretty much the end of the discussion. As a 52-year-old man, can I know something of the anguish of women who long to have a child? The biological clock is, after all, a reality for women – I could theoretically still have a child if I were 70.
The problem is that “it’s different for men” translates easily into “it’s easier for men” and it’s one small step more to “you can’t understand what it’s like for us!” And from this the debate about not having a child is sequestered firmly into the experience of women: women grieve for the children they longed for and men don’t. Maybe that’s true – I can’t claim to be surrounded by men who talk about this. I think that by and large we don’t.
I am not sure what I am allowed to feel and how that differs from what I actually feel. Do men feel grief over being childless differently from women? If so, how? Does it matter?
Daily encounters remind me of what I don’t have. Just this morning, returning from the local shop, I saw my neighbour standing outside the door of our mansion block. Our building is set back off the road and has a communal garden bordered by hedges. There she stood with her two tiny ones, a little boy and girl gazing curiously at the pearled intricacies of a spider’s web spun across the lower branches of our hedge. I say good morning to their mother and then to them. I crouch down to join their wonder, and agree with their mother that probably the mummy spider was having a rest after her hard work and we should not disturb her. I watch their faces, their cheeks the lustre of rose petals, full of wonder at the spectacle. Adorable.
Shopping isn’t easy either. Politely standing aside for the harassed family of four as they pass, trying to manage the strollers, the shopping and the children’s runaround energy, I feel socially inferior. Despite loving my job and enjoying strong friendships, I feel I am not a real member of society – an unmarried man without children. I can’t participate in the hullabaloo about schools, catchment areas, snotty noses, and playdates. I am outside, looking in.
How do I disentangle these feelings? It’s easy just to distract myself. I think the most accessible layer of feeling is a sense of regret – I remonstrate with myself for the chances I missed and sadness for the people I have hurt. I can’t help but replay moments in my life that I wish could have turned out differently. These are so painful. That evening six years ago when I managed in one short hour to say all the wrong things to the right woman, precisely because she was the right woman. I could not bear to have that which I most wanted. So I destroyed something that I really longed for.
Only a few days later, she met someone else and two years later got married. They have a child now. I really wish I didn’t know that. But I do. A little girl. And I can’t help but wonder what it would be like if that little girl were my little girl. Would she have my eyes? My smile? What is it like to see in a child little mannerisms, a way of doing things, moving, speaking, laughing, playing, that remind us of ourselves? Or of course, she may have the eyes of my loved one. And what a joy that would be, to see in our child’s face, our love; to bring into this world a beautiful child that was of us – a child that would grow into her own person but growing out of who we are.
So another part of my sadness is born out of absence – fearing that I will never feel those exquisite joys; that I will never hear my son or my little girl call me dad. How sweet it would be to hear that word from the mouth of my little girl or my small son. To see them take first steps, to comfort them when they cry, to tuck them in before sleep and read them stories. To kiss them goodnight and be with them when the world seems too much. It could still happen. But it feels less likely with each passing year. And just because theoretically I still could doesn’t mean I don’t feel the loss of all those could-have-beens. Also, with the passing of the years, would I now have the energy if it were to happen?
And what of those parents who might answer me and say, “this guy is clueless. Does he have any idea of how hard it is to be a parent?” No. I don’t. I don’t know what it’s like to be short of sleep for a decade. To be exhausted and overwhelmed and have no time for myself. To feel mind numb after reading the same story for the 20th time. No, I don’t understand these things. But I do know what it is like to feel incomplete. To be fit for a purpose that I cannot fulfil. I will probably never know if I could bear the exhaustion and sacrifice that being a father would require but I long to try, precisely because that is the only way I can express something essential about who I am. It is not simply that I would like to be a father. I feel I am made to be a father. And because I don’t have a child, and it saddens me very much to admit this, in some ways I don’t feel fully like a man.
Sometimes, however, I get invited into the club. Four-year-old Archie arrived with his mother, Maggie, for a gathering of friends yesterday. Of course, he didn’t so much arrive as explode through the door. “I’m here!” he shouted as he ran into the hallway. While we adults exchanged smiles, Archie pulled out a dozen assorted soft toys, including a penguin, a lion, a giraffe and a hippopotamus, and left them strewn around the living room floor where he set up camp – a play base from which to launch sorties of boy energy into the kitchen.
Under his arm, too large and perhaps too fierce for any bag, is a pink Tyrannosaurus rex. The first chance I got, I served up food and went to play with him. Once we agreed that Captain America really was the best superhero, we were firm friends for the day, and Lego building and soft toy wars could ensue. Later, as we walked to the local cafe for tea and cake, he took my hand. For so many parents, this must be commonplace – to feel a small hand neatly clasped around the fingers of an adult – but for me it was special. His mother and I swung him, one, two, three, and up he went, until our arms were tired. An afternoon replete with the small joys of spending time with a little boy as he negotiates his way through the world.
And then they go home.
It’s hard to feel alone inside a long and happy marriage. But it’s easier than it looks, perhaps, to feel lonely. Last week, Italian police officers responding to reports of screaming and crying inside an apartment in Rome found something unexpected behind the door. Jole and Michele were a devoted elderly couple who had ostensibly got themselves worked up over a sad story on the TV news, but some gentle questioning elicited the fact that both were struggling with terrible loneliness. After 70 years of apparently loving marriage they still had each other, and yet that clearly was not enough.
This being Italy, the officers rather charmingly cooked them a meal of spaghetti with butter and parmesan and stayed to chat, before doing the washing up and posting a flowery account on Facebook of how loneliness can suddenly sweep over you “like a summer storm”. The story went viral because it’s so heartwarming, and yet on second reading it’s also rather unsettling. The lonely are not quite the people we think they are.
It will be 20 years ago this summer that the first Bridget Jones novel was published, a timely reminder to ignore the spectacularly awful sequels and remember just how neatly the original skewered some of the myths about lonely singleton life.
Bridget was famously terrified of dying alone and forgotten, but ironically the one thing she wasn’t was lonely: she was riotously surrounded by friends and family, even if they did all keep harping on about her getting a proper boyfriend. It’s smug marrieds who can all too easily collapse in on themselves, severing old friendships they will come to regret in the process. (Anyone who thinks that having a baby means you’ll never feel alone again, meanwhile, has yet to find out how it feels to be home with a howling infant, desperately trying to engage the postman in conversation because he’s the only sentient adult you’ll see for hours.)
It’s all too easy to become consumed by family life and then wake up in middle age, ostensibly at the centre of a rich and busy life, struggling to remember your last meaningful conversation. That feeling may not be loneliness yet, but it’s a first step on the road.
For while the cavernously empty feeling endured by the bereaved or unwillingly single can indeed be a terrible thing, and life-shortening to boot, it’s not the only kind of loneliness. A recent University of California study found that while almost half of its elderly subjects confessed to feeling lonely at times, only 18% of them actually lived alone.
Unhappy marriages, atrophying into long silences and separate lives, might have something to do with that, but the story of Jole and Michele suggests something else: a distinct kind of loneliness stemming not from the absence of significant others but from a feeling of disconnection with the wider world, a sense that you’re no longer part of something shared and human. Is it just a coincidence that the Italian couple’s crisis seems to have been provoked by a run of news stories – violent attacks, abuse at a kindergarten – revealing human nature at its coldest?
Fleeting loneliness comes to all of us occasionally, but it solidifies into something deeper and darker for those who start to perceive the world as a harsh and hostile place, one that wouldn’t welcome efforts to connect even if you try. It’s that nagging feeling of rejection, of not belonging or standing somehow apart from others, that is the true hallmark of feeling lonely in a crowd, and it’s by no means the preserve of the old.
Interestingly, a recent Brunel University study of over-50s found more than half of those identifying themselves as lonely had been that way for over 10 years, suggesting the feeling had become part of the fabric of their lives. (The same study, by the way, found levels of loneliness had barely changed since the second world war; so much for the idea of a modern epidemic, caused by fragmenting and hectic modern family lives.)
So perhaps it’s not so surprising that this week’s obituaries of the fabulously wealthy Duke of Westminster, a father of four, should describe him as “lonely”. Immense wealth can of course be isolating – although the money clearly didn’t make the duke unhappy enough to get rid of it, or indeed to eschew the family tradition of minimising inheritance tax liabilities – but in Gerald Grosvenor’s case something else seems to be going on. What emerges is a picture of a man struggling all his life with feelings of inadequacy and anxiety, worried that he had done nothing to live up to the reputation of those ancestors who built his unearned fortune. Bullied at school, he reportedly left Harrow without one proper friend.
And if you can’t bring yourself to feel sorry for a billionaire, the blunt truth is that not all lonely people are lovable old grannies who tug at your heartstrings. An unhappy few have pushed others away with their self-destructive behaviour and are now paying a high price for it; some have struggled bitterly all their lives with the art of making friends, never quite mastering social norms. How much of the late-night bile spewed on social media simply reflects the envy and frustration of those who see other people happily connecting all around them and just don’t quite know how to join in? Loneliness has its dark side, one not so easily solved by more visits from the grandchildren or well-meaning volunteer “befrienders” popping in for chats over coffee.
For Jole and Michele, at least, perhaps there will be a happy ending. Now their story has been made public, perhaps surviving relatives or old friends will rally round, and if nothing else the knowledge that strangers worldwide are now asking how they can send letters or visit must do something to restore their faith in human nature.
Yet while a little kindness goes a very long way, it’s too easy to pretend loneliness can all be solved by a few more companionable plates of spaghetti. It makes for a less heartwarming story but the truth is that, like the poor, the lonely may to some degree always be with us – even, perhaps, when they’re ostensibly with someone else.
This is Depression Awareness Week, so it must be hoped that during this seven-day period more people will become more aware of a condition that a minority experience, and which most others grasp only remotely – confusing it with more familiar feelings, such as unhappiness or misery.
This perception is to some extent shared by the medical community, which can’t quite make its mind up whether depression is a physical “illness”, rooted in neurochemistry, or a negative habit of thought that can be addressed by talking or behavioural therapies.
I’m not concerned about which of these two models is the more accurate. I’m still not sure myself. My primary task here is to try to explain something that remains so little understood as an experience – despite the endless books and articles on the subject. Because if the outsider cannot really conceptualise serious depression, the 97.5% who do not suffer from it will be unable to really sympathise, address it or take it seriously.
From the outside it may look like malingering, bad temper and ugly behaviour – and who can empathise with such unattractive traits? Depression is actually much more complex, nuanced and dark than unhappiness – more like an implosion of self. In a serious state of depression, you become a sort of half-living ghost. To give an idea of how distressing this is, I can only say that the trauma of losing my mother when I was 31 – to suicide, sadly – was considerably less than what I had endured during the years prior to her death, when I was suffering from depression myself (I had recovered by the time of her death).
So how is this misleadingly named curse different from recognisable grief? For a start, it can produce symptoms similar to Alzheimer’s – forgetfulness, confusion and disorientation. Making even the smallest decisions can be agonising. It can affect not just the mind but also the body – I start to stumble when I walk, or become unable to walk in a straight line. I am more clumsy and accident-prone. In depression you become, in your head, two-dimensional – like a drawing rather than a living, breathing creature. You cannot conjure your actual personality, which you can remember only vaguely, in a theoretical sense. You live in, or close to, a state of perpetual fear, although you are not sure what it is you are afraid of. The writer William Styron called it a “brainstorm”, which is much more accurate than “unhappiness”.
There is a heavy, leaden feeling in your chest, rather as when someone you love dearly has died; but no one has – except, perhaps, you. You feel acutely alone. It is commonly described as being like viewing the world through a sheet of plate glass; it would be more accurate to say a sheet of thick, semi-opaque ice.
Thus your personality – the normal, accustomed “you” – has changed. But crucially, although near-apocalyptic from the inside, this transformation is barely perceptible to the observer – except for, perhaps, a certain withdrawnness, or increased anger and irritability. Viewed from the outside – the wall of skin and the windows of eyes – everything remains familiar. Inside, there is a dark storm. Sometimes you may have the overwhelming desire to stand in the street and scream at the top of your voice, for no particular reason (the writer Andrew Solomon described it as “like wanting to vomit but not having a mouth”).
Other negative emotions – self-pity, guilt, apathy, pessimism, narcissism – make it a deeply unattractive illness to be around, one that requires unusual levels of understanding and tolerance from family and friends. For all its horrors, it is not naturally evocative of sympathy. Apart from being mistaken for someone who might be a miserable, loveless killjoy, one also has to face the fact that one might be a bit, well, crazy – one of the people who can’t be trusted to be reliable parents, partners, or even employees. So to the list of predictable torments, shame can be added.
There is a paradox here. You want the illness acknowledged but you also want to deny it, because it has a bad reputation. When I am well, which is most of the time, I am (I think) jocular, empathetic, curious, well-adjusted, open and friendly. Many very personable entertainers and “creatives” likewise suffer depression, although in fact the only group of artists who actually suffer it disproportionately are – you guessed it – writers.
There are positive things about depression, I suppose. It has helped give me a career (without suffering depression I would never have examined my life closely enough to become a writer). And above all, depression, in nearly all cases, sooner or later lifts, and you become “normal” again. Not that anyone but you will necessarily notice.
But on the whole it’s a horror, and it’s real, and it deserves sympathy and help. However, in the world we live in, that remains easier to say than do. We don’t understand depression partly because it’s hard to imagine – but also, perhaps, because we don’t want to understand it.
I have a suspicion that society, in its heart of hearts, despises depressives because it knows they have a point: the recognition that life is finite and sad and frightening – as well as those more sanctioned outlooks, joyful and exciting and complex and satisfying. There is a secret feeling most people enjoy that everything, at a fundamental level, is basically OK. Depressives suffer the withdrawal of that feeling, and it is frightening not only to experience but to witness.
Admittedly, severely depressed people can connect only tenuously with reality, but repeated studies have shown that mild to moderate depressives have a more realistic take on life than most “normal” people, a phenomenon known as “depressive realism”. As Neel Burton, author of The Meaning of Madness, put it, this is “the healthy suspicion that modern life has no meaning and that modern society is absurd and alienating”. In a goal-driven, work-oriented culture, this is deeply threatening.
This viewpoint can have a paralysing grip on depressives, sometimes to a psychotic extent – but perhaps it haunts everyone. And therefore the bulk of the unafflicted population may never really understand depression. Not only because they (understandably) lack the imagination, and (unforgivably) fail to trust in the experience of the sufferer – but because, when push comes to shove, they don’t want to understand. It’s just too … well, depressing.
A rare mental illness can make the sufferer believe they are dead, partly dead or do not exist.
Chronicled in the Washington Post by Meeri Kim, Cotard’s syndrome — sometimes dubbed ‘Walking Corpse syndrome’ — is a condition where patients believe they are dead, parts of their body are dead or that they do not exist. Any evidence to support the fact they are alive is “explained away” by sufferers, according to the Post.
It is not classified under the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) but is recognised as a “disease of human health” in the International Classification of Diseases. According to Mind: “It is linked with psychosis, clinical depression and schizophrenia”.
A spokeswoman for Mind told The Independent the syndrome was “certainly rare”.
“Cotard’s syndrome is a type of delusion that is usually associated with denial of self-existence,” she said.
“The person experiencing the delusion might believe that they are dead, dying, parts of their body do not exist or they do not need to do activities to keep themselves alive (drink, eat, basic hygiene etc.)”
French neurologist Jules Cotard identified the first case in the 1800s. He described a woman suffering from the condition as affirming “she has no brain, no nerves, no chest, no stomach, no intestines… only skin and bones of a decomposing body”.
Esmé Weijun Wang spoke to the Post about her experience of the condition, which she suffered from for two months, explaining that after weeks of losing “her sense of reality” she woke up and told her husband she had actually died a month before, when she had fainted on a plane.
She said: “I was convinced that I had died on that flight and I was in the afterlife and hadn’t realised it until that moment.”
Ms Wang, who was previously diagnosed with a form of bipolar-type schizoaffective disorder, later recovered and “no longer saw herself as a rotting corpse”.
A Mind spokesperson said “in terms of prevalence, there seems to be very few studies” meaning it is difficult to assess how many people are affected by the condition.
The Washington Post says “what causes Cotard’s syndrome and other delusions is a matter of debate” and speculates on a range of possibilities including brain impairment.
Professor and clinical psychologist Peter Kinderman told The Independent: “This syndrome is extremely rare so there’s not much known about it, most literature on it is individual case studies over many years.”
He says one theory about the condition’s cause is that when “conditions exist to make someone feel confused or distressed” the individual can combine all their thoughts and beliefs – some of which may be distressing and unusual, with the feeling that they don’t recognise themselves.
He said this could mean “people come up with the best conclusion they can to explain the experiences they’re having, which may be that they’re dead.”
In 2013, a British man called Graham was interviewed in the New Scientist. He was diagnosed with Cotard’s syndrome after believing his “brain was dead”. He believed he had killed it after a suicide attempt following severe depression.
Graham said he visited a graveyard during this time as “it was the closest I could get to death”.
He said: “I didn’t need to eat, or speak, or do anything.”
Graham’s condition gradually improved with psychotherapy and drug treatment.
The best way to cope with miscarriage is for men and women to talk – to their partners, to their friends, to a counsellor. After a rich, successful man like Mark Zuckerberg publicly shared his grief about his wife’s miscarriages, it may make it easier for more men to finally open up about their own feelings of loss. There is nothing unnatural about grieving for the loss of your unborn child.
Jo Farrell’s most recent photography project began, by chance, in the back of a cab. Her career-long interest is in documenting disappearing cultural practices, and in 2005 she got chatting to a Shanghai taxi driver about foot binding. “He mentioned that his grandmother had bound feet,” Farrell recalls. “Most people told me that it was such an old tradition, there were no women left. I went to the village of the cab driver’s grandmother, in the Shandong province, and met Zang Yun Ying. She became the first woman in my project.”
What followed was a nine-year journey across China, tracking down the last survivors of foot binding. She found just 50 women. Five of them were still completely bound and in hiding, but most had released their binds. All were from impoverished villages in the provinces of Yunnan and Shandong. The oldest, Zhang Yun Ying, was 103. Farrell’s photobook Living History: Bound Feet Women of China, contains close-up portraits of the severe deformity they suffered.
Foot binding was outlawed in China 103 years ago, following almost 10 decades of the practice. But the last factory producing “lotus shoes” – the triangular embroidered platforms used to showcase the women’s minuscule pointy feet – closed just six years ago.
After foot binding was banned it became taboo, and in 1950 Chairman Mao ordered anti foot-binding inspectors to publicly shame any bound women they found. “It was considered an old tradition that did not reflect modern China and should be stopped,” Farrell tells me from her flat in Hong Kong. “Their binding would be hung in windows so that people would laugh at them.”
Most women were bound at the age of seven. “The first year is particularly excruciating because the girls were made to walk until their toes would break under their weight,” says Farrell. “After that, the toes became numb and now, 50 or 60 years later, they don’t have any pain in their feet. It’s all quite numb.”
Farrell insists her photo series isn’t meant to sensationalise, but to educate us about a little-known custom. She admits she was surprised by her own reaction to seeing bound feet close up. “The first time I met Zang Yun Ying and held her foot in my hand it was just incredible – so soft and so incredibly formed.”
In spite of the brutality the project lays bare, its message is one of hope, survival and grit. “In Chinese society, it was the only way forward for women,” says Farrell. “They did it because they thought it would give them a better future, a better life.”
A 95-year-old woman is helping a last ditch effort to preserve an ancient African language before it goes extinct.
Hanna Koper and her two sisters are thought to be the last remaining speakers of the San language N|uu, rated as critically endangered by Unesco. The San, also known as “bushmen”, were the first hunter-gatherers in southern Africa.
N|uu, which has 112 distinct sounds, was passed on orally down the generations but never written down. Now Koper and her siblings have worked with linguists to design alphabet charts with consonants, vowels and 45 different “clicks” that are typical of San languages, as well as rules of spelling and grammar.
Matthias Brenzinger, director of the Centre for African Language Diversity at the University of Cape Town, who is working on the project with British academic Sheena Shah, said: “It’s the most indigenous language of southern Africa.”
N|uu and related languages were spoken in most parts of southern Africa, he added, but were wiped out by white settlers, sometimes with the support of locals. “Very often they kept the young girls, but they killed all the men. Genocide is the major reason for these languages in southern Africa to be extinct now, and then forced assimilation. Farmers were taking their land so there was no subsistence for them any more.”
Brezinger has overseen the teaching of N|uu at a local school, where pupils learn basics such as greetings, body parts, animal names and short sentences. One teenage girl in particular is showing huge promise in the language but “at one stage there will be no fluent speaker any more”, he said.
That does not mean N|uu will necessarily be doomed to the archives, however. “With these languages, you never know,” said Brezinger. “Hawaiian was extinct basically, and then there was a movement 35 years ago and you have 2,000 mother tongue speakers of Hawaiian.
“This is why it’s very important now for us to record as much as possible with the speakers so we have material, spoken language on video tape and so on.”
N|uu has one of the biggest speech sound inventories in the world, he added, including more than 45 click phonemes, 30 non-click consonants and 37 vowels. “Language is the most important cultural asset, so if you lose your language, you lose your culture. In Canada, there is a clear link between those indigenous people who lose their language and suicide rates. In this globalised world, local identity is essential,” Brezinger.
Koper, who lives near Upington in Northern Cape province, told South Africa’s Sunday Times newspaper that when she was a girl in the days of white minority rule, she and her siblings were told their language was ugly. “We were told not to make noise and the baas [a Dutch word for supervisor] would shout at us if we spoke the language because they believed we were gossiping,” she was quoted as saying.
“This is my language. This is my bread. This is my milk. I didn’t learn it, but I ate it and this is how it is my language.”
Koper’s sister Katrina Esau, 82, who has received an award from President Jacob Zuma for her work to preserve San language and culture, added: “Other people have their own languages. Why must my language be allowed to die? It must go on. As long as there are people, the language must go on.”
Feelings of guilt and shame in women who experience miscarriages are exacerbated by misconceptions over the causes, a US study suggests.
An online survey of 1,084 people, which formed the basis for research published in the Obstetrics & Gynecology journal on Monday, found that almost half of those who had a miscarriage felt guilty. Two in five said they felt like they had done something wrong, and the same number reported feeling alone.
A significant number of the respondents were under misapprehensions as to what caused the loss of the pregnancy. Three-quarters believed that a stressful event could bring about a miscarriage, 64% thought that lifting a heavy object could be a cause, and a fifth that previous use of oral contraceptives could induce pregnancy loss.
Coupled with the fact that 57% of those who had suffered a miscarriage said they were not given a cause for the loss, the researchers, from the Albert Einstein College of Medicine at Yeshiva University and Montefiore Medical Center, both in New York, believe such misapprehensions could contribute to the the negative feelings experienced.
Dr Zev Williams, the director of the programme for early and recurrent pregnancy loss, said: “The results of our survey indicate widespread misconceptions about the prevalence and causes of miscarriage. Because miscarriage is very common but rarely discussed, many women and couples feel very isolated and alone after suffering a miscarriage. We need to better educate people about miscarriage, which could help reduce the shame and stigma associated with it.”
The respondents, who were self-selecting, filled in a 33-question survey, which was open for three days in 2013, to assess perceptions of miscarriage, with 10 of the questions specifically directed at men or women reporting a history of miscarriage.
Of those who took part 15% said they or their partner had suffered a miscarriage, but the majority of respondents (55%) believed that miscarriages are uncommon (defined as less than 6% of all pregnancies). The truth is that miscarriages end one in four pregnancies and are by far the most common pregnancy complication, the paper says.
A fifth of people incorrectly believed that lifestyle choices during pregnancy, such as smoking or using drugs or alcohol, were the single most common cause of miscarriage, more common than genetic or medical causes. In reality, 60% of miscarriages are caused by a genetic problem.
The importance of hearing from others who have gone through the same experience was highlighted by a significant minority of those who had suffered a loss in pregnancy. Almost half said they felt less alone when friends disclosed their own miscarriage and 28% stated that celebrities’ disclosure of miscarriage had eased their feelings of isolation.
The authors concluded: “Patients who have experienced miscarriage may benefit from further counselling by healthcare providers, identification of the cause, and revelations from friends and celebrities. Healthcare providers have an important role in assessing and educating all pregnant patients about known prenatal risk factors, diminishing concerns about unsubstantiated but prevalent myths and, among those who experience a miscarriage, acknowledging and dissuading feelings of guilt and shame.”
The majority (55%) of respondents were women and all were aged 18-49. The sociodemographic distribution across gender, age, religion and geographic location and household income was consistent with 2010 national census statistics but race and ethnicity were not.
It is a treatable condition suffered by at least 2% of the population, both male and female, that devastates the lives of those who have it and can lead to prolonged depression and even suicide. Now a fledgling charity, the Body Dysmorphic Disorder Foundation, hopes to raise awareness of the obsessive anxiety condition that leaves people convinced there is something flawed or “ugly” about their looks.
The foundation’s first conference, on 30 May in London, is aimed at health professionals, body dysmorphic disorder (BDD) sufferers and their carers, and is being promoted by a two-minute film, You Are Not Alone, directed by Steve Caplin, which tackles one of the greatest issues surrounding BDD: the idea that the person with it is isolated and cannot fit in.
“One of the biggest problems is that this is an under-researched disorder which is not fully understood by either professionals or laymen,” says clinical psychologist Dr Annemarie O’Connor, director of themindworks, a London-based psychology practice, who will be running a workshop at the conference. “This is not simply a case of feeling low or having to change your clothes a couple of times before you go out. It’s an obsessive anxiety disorder which can lead to huge levels of distress.”
That distress in turn can lead to prolonged bouts of depression and often suicide. “There’s such a high level of hopelessness and a real conviction among sufferers that they are ugly to look at or flawed,” explains O’Connor.
“Many sufferers turn to cosmetic intervention, but when that doesn’t change how they feel or how they see themselves. They become utterly convinced that a better way doesn’t exist, and this makes suicide a real feature of the disorder.”
Robert Pattinson, who was catapulted to fame after getting the role of vampire Edward Cullen in the Twilight films, told Australia’s Sunday Style magazine that he suffers from anxiety and BDD issues, which can become crippling before a red-carpet event.
“I get a ton of anxiety, right up until the second I get out of the car to the event, when suddenly it completely dissipates,” said Pattinson. “But up until that moment I’m a nutcase. Body dysmorphia, overall tremendous anxiety. I suppose it’s because of these tremendous insecurities that I never found a way to become egotistical. I don’t have a six-pack and I hate going to the gym. I’ve been like that my whole life. I never want to take my shirt off.”
Scarlett Bagwell’s 19-year-old daughter, Alannah, first began exhibiting signs of BDD at the age of 14. “I noticed that she had lost a lot of weight fast and at first I thought it was anorexia, but then other things began to happen – she would refuse to come out with us, didn’t want to leave her room … I still thought it might be teenage angst, but then one day she dropped out of school, despite having always loved it.
“There was so much turmoil in her head – she couldn’t get on the bus, I’d drive her to school but she wouldn’t go in. She really wanted to, but she couldn’t physically get out of the car. She’s a beautiful girl, but she was convinced there was so much wrong with her – she’d insist that her nose was too big and deformed, that she had tiny, piggy eyes and funny hair.”
As Alannah’s condition worsened, including bouts of self-harm and suicide attempts, so her family struggled to get a diagnosis. “I had to fight the system to get the proper treatment for her,” says her mother. “Just getting a diagnosis was so hard and meanwhile Alannah went from being very independent to being a baby again. At times I even had to force her to wash and I would wash her hair for her. Everything was a struggle. I felt I was failing my daughter.”
The hard-won key to her recovery was a combination of cognitive behavioural therapy (CBT) specifically tailored for BDD sufferers and anti-depression medication.
Alannah is now sitting her A/S exams at a local college and intends to go to university. Her mother hopes that the establishment of a regular conference will lead to further understanding, help and support for those with BDD. “I think that because everybody has slight issues with their appearance – they don’t like their hair, or they think a particular dress makes them look bad – they can’t understand the struggle that actual body dysmorphics go through,” she says. “It stops you functioning. People with body dysmorphia are very isolated; they often can’t bring themselves to go out, no matter how much they want to, they don’t want to be seen.
“We were lucky that Alannah has had help and the support of her family, but I wonder how many people struggle without that support because they are diagnosed later, undiagnosed or misdiagnosed,” she said.