What does depression feel like? Trust me – you really don’t want to know

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Depression, emotions, experience, support, symptoms

What does depression feel like? Trust me – you really don’t want to know

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.

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What they don’t tell you about dementia

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dementia, diagnosis, support

What they don’t tell you about dementia

My mum doesn’t know who I am. Sadly, I don’t mean that in an angsty way – she literally has no idea who I am. Sometimes I’m her sister. Sometimes I’m her dead mother. Once I was Shirley Bassey, which made for an interesting evening. My mum was diagnosed with dementia with Lewy bodies three years ago, when she was 64 and I was 30. She’d just retired, and we were looking forward to spending more time together.

I’d spent my 20s doing my own thing, having selfishly assumed that we’d have lots of time to get to know each other properly when I got bored of clubbing. I was wrong. Instead of visiting coffee shops, we ended up visiting the memory clinic. After months of appointments we were finally sent home with a diagnosis, an information leaflet and a six-month review booked in to see how we were getting on. I imagine it’s a bit like going home with a newborn baby, but with less support and no balloons. Having previously struggled to even take care of a houseplant, I was fairly apprehensive at the prospect of becoming a carer.

As mum’s dementia progressed I came to realise that despite all the meetings, visits and consultations you have to go through to even get to the diagnosis, nobody actually tells you about the reality of this horrendous disease. They don’t tell you how to deal with your previously gentle mother swearing at you, or that she’ll hit you around the head as you desperately coax her into the bath. Neither do they tell you what sort of nappies to buy when she becomes incontinent, let alone how you’re supposed to persuade her to wear one or stop her taking it off and stashing it in a pillow case. I thought I might be changing nappies at some point in my 30s, but I didn’t imagine it would be like this.

They don’t tell you about the hours of bureaucracy and meetings with social services that you have to trudge through, when what you desperately need is some advice and support. They don’t tell you that it takes six months for them to assess whether you’re entitled to even get on the waiting list for advice and support. They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson, and tries to talk to him. Nobody tells you how to placate the angry parents who think they’ve encountered the world’s frailest child-snatcher. I had no idea what to say to the helpful passerby who insisted on intervening because he’d mistaken her having a meltdown in the street for a geriatric kidnapping.

They don’t tell you how to deal with the crushing realisation that she’s never going to phone you again, let alone see you get married or be a grandmother to your kids. Nobody tells you how to channel the anger you feel that your fellow thirtysomethings’ lives now involve marriage, mortgages and children, and yours revolves around a terminally ill, confused old lady who doesn’t even know who you are. They’ve chosen their responsibilities; you’d give anything not to have yours.

They don’t tell you that once she nears the final stage you’ll spend hours desperately trying to feed her a spoonful of hospital jelly even though she’s pretty much given up on eating, because you can’t just watch her starve to death. It doesn’t matter how distraught you are that she’s wasting away before your eyes, or how much it upsets you to agree to the doctor’s request for a DNR order; this disease is relentless in its cruelty.

Dementia has robbed my mum and me of the time we were supposed to have, and I’m still not sure how to feel about it when there’s nothing tangible to mourn. “Waking grief” – that’s what someone called it. When the person you knew is gone, but not gone. But it’s not. It’s a waking, sleeping, relentless cloud of despair that never quite goes away, even when you think you’re OK. But then nobody tells you how to grieve either, do they? Especially when there’s no funeral to go to, just an endless stream of pointless review meetings.

Why should teachers talk about mental health with students and colleagues?

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anxiety, Bullying, career, colleagues, Depression, harassment, management, mental health issues, recovery, secret, stigma, stress, support, teachers

Why should teachers talk about mental health with students and colleagues?

Clare can now talk with calm reflection about the moment she decided to end her life. She remembers feeling as if she were living in a sort of twilight zone where nothing made sense: she was being shunned by colleagues and faced losing her job as a teacher.

Things had spiralled out of control after Clare was signed off work with stress-related depression. When invited back to school to talk about when she might return, managers tried to renegotiate her contract. Clare immediately sought legal advice. “I felt isolated, bullied and harassed.

“My managers were asking other staff members about me and I was becoming increasingly anxious by what was happening. Instead of supporting me and making reasonable adjustments to the fact that I was off with stress, the school’s response was completely punitive.”

Part of the problem is that mental illness in teaching is stigmatised, says Clare. “If you reveal that you are stressed, it is seen as a great weakness – that you are just not up to the job.”

Figures published by the Association of Teachers and Lecturers (ATL) this year showed that more than a third of school and college staff have noticed a rise in mental health issues among colleagues in the past two years. Despite this, 68% kept their problems a secret from their bosses.

In a recent Teacher Support Network survey, the majority of teachers (89%) blamed excessive workloads for their mental health problems, and 40% wouldn’t talk to anyone at work about mental illness because was seen as “a sign of weakness”.

People worry about being seen as not good enough, says Tim, a teacher who retired early due to stress and anxiety. “If you are suffering from work-related stress you are especially reluctant to seek the support of senior management for fear that your complaints could be seen as an indictment of their management.”

David Ambler, ATL district secretary in Birmingham, says mental health problems are also stigmatised because of worries about how this will make a school look. “To reduce the stigmatisation of mental illness requires more than simply a change of attitude among headteachers and senior management in school. It requires a change of attitude among the general public and parents to understand that teaching is a stressful job and sometimes teachers go under or need treatment.”

When Michael was signed off with stress-related depression, he found that some colleagues were understanding but others were not. Teachers worry about the impact of admitting to a mental health problem on their career, he says. The headteacher who employed Michael in his current post said that she was taking a huge risk and put him on a six-month trial period. “Employers are not as sure about mental illness as they would be about physical illness,” he says. “If I broke my leg, for example, and came back to work I don’t think I would be trialled in the same way.”

But this needn’t be the case if the stigma around the issue of mental illness is tackled and the right support is put in place. Rachel, who has experienced depression for years but hasn’t taken time off work, puts her ability to keep teaching without taking any extensive leave down to the support of her senior leadership team and colleagues.

“I am able to talk to all my senior management team and have good friends on the staff who also know and are supportive. My experience of mental health, if anything, has done the opposite of holding me back. But if I had not received the understanding and support I did then I would almost certainly have ended up off sick and probably left teaching.”

Nor is this just an issue of doing the right thing and supporting people experiencing mental health problems – it’s also essential to their recovery. Alison Stark, a senior teacher at a Dutch secondary school, who is off sick with work-related burnout, says there is a more open culture to mental health in the Netherlands.

“The first step is admitting that you have a problem. I talked about my problems with a friend and just being able to say out loud that I am struggling helped me accept things,” she says.

Her school has been patient and supportive – rather than worrying about what to say, colleagues have sent her cards, flowers and message of support. “It is important that schools have a supportive management who are understanding. Headteachers need to support management and create an atmosphere in which teachers can talk about it [mental illness].”

For Stark, the most supportive person has been her deputy head, who has sought solutions by asking her what she needs and what would aid her recovery. “They say, ‘do you want me to allow you home access to email or not? Should I block it and protect you?’”

An openness about mental illness could also help students by ensuring they have positive role models. Kelly, who just started in a girls’ school, is recovering from an eating disorder and used to self-harm. She says stress from teaching can cause a flare-up in food-control behaviours and she has visible scars on her arm. “I am what you could call a normal weight so it’s not obvious I struggled with bulimia, anorexia and excessive exercising,” she says.

Kelly wants to share her experiences to show her pupils that no one should let mental health problems define them, but she worries about the repercussions. “I worry that my school would not be supportive of my talking about my experiences as they would be concerned about the potential backlash from parents. If students mis-reported the story at home some parents may be concerned about my capacity to cope.”

• Most of the names in this article have been changed to protect the teachers who shared their stories.

The Tackling mental health stigma in schools series is funded by Time to Change. All content is editorially independent except for pieces labelled advertisement feature. Find out more here.

Teachers left to pick up pieces from cuts to youth mental health services

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behavioural problems, CAMHs, Children, counselling, counsellors, early intervention, emotional difficulties, mental health issues, mental health services, school, stress, support, teachers, training, well-being, young people

Teachers left to pick up pieces from cuts to youth mental health services

As the headteacher of large primary school in the west of England, Joan Cunningham is accustomed to the demanding aspects of managing an intake from a mainly disadvantaged area. However, for the past couple of years, she says, one issue has escalated so dramatically that it is nearly at crisis point. “There is so much more pressure on schools and teachers to deal with children’s mental health and behavioural problems,” she says. “We provide as much support as we can but, with fewer resources available and a massive increase in need … the pressure has been incredible.”

Cuts to mental health and other services for young people mean teachers are increasingly having to fill the gap, even though schools do not always have the resources or training to provide the extra support pupils with mental or emotional issues may need.

“It was already hard to access the right services before cuts but its getting worse,” Cunningham says. “Teachers … are not mental health professionals, and now there is a vacuum in the services we have [traditionally] relied on. Social services departments are under more pressure due to cuts, Sure Starts … have vanished, [and] in many cases the voluntary organisations we used to be able to turn to are disappearing. Sign-posting families to where they can get help is much harder because of all of this.” At a time when families are under greater financial strain and “even very young children” are under pressure to achieve academically, she concludes, the need for support is “growing very fast”.

Child and adolescent mental health services (Camhs) have been particularly hard hit. These specialist services assess and treat children and young people with mental, emotional or behavioural difficulties. Typically, when schools cannot offer the support of their own counsellor, or when a child has especially serious difficulties, they will seek out their local Camhs for help.

In many cases, local authorities commission and fund these services, and the impact of council budget cuts on Camhs in some areas has been severe. According to research by the charity Young Minds, two-thirds of councils in England have reduced their Camhs budget since 2010. And when the charity asked NHS trusts and councils about other mental health spending targeted at children and young people, such as youth counselling or specific services for schools, more than half had cut budgets – some by as much as 30%.

The cuts mean local authorities’ Camhs spending is increasingly redirected towards more serious cases of mental ill-health, at the expense of early intervention services. “Draining money from early intervention services is short-sighted and just stores up problems for the future,” says Sarah Brennan, chief executive of Young Minds. “The result is Camhs feels it is being asked to respond to an enormous number of issues and schools feel Camhs has left them high and dry.”

Chris Harrison, national executive member and former president of the NAHT, says part of the problem until recently has been that targets in education have allowed children’s wellbeing to slip down the agenda. “The issue of mental health [in schools] has been coming to the fore over the past four or five years; there’s a real groundswell of interest, but it isn’t yet a priority in schools. We need to accept that preparation for life is about more than academic results.”

Research by the Teacher Support Network, a charity focusing on teachers’ wellbeing, shows around half of teachers feel pupil behaviour is worsening. Its survey of over 800 teachers also found almost two-thirds were stressed as a result.

The cuts to Camhs mean schools are struggling to provide professional support on site. Some have set aside cash from the Pupil Premium to pay for a regular counsellor. Andy Bell, deputy chief executive at the Centre for Mental Health, says that an “ad-hoc” system of support relies too heavily on the initiative of individual heads or teachers, and is undermined by unsatisfactory and arbitrary access to funds. “We see raising awareness of this issue as a major priority,” he says. “When we conducted research on child behavioural problems we found that three-quarters of parents asked teachers for help … However, some schools are better equipped than others. Many have virtually nothing by way of [professional] support, while others have full-time counsellors.”

Inadequate and underfunded services mean undue stress is being put on teaching staff, who may feel they are not trained or qualified to tackle many of the emotional or mental health problems that come up.

And with anecdotal evidence suggesting the number of young people experiencing mental health problems is rising, the crisis in Camhs is set to get worse. In 2004, the last year that government statistics were centrally collected on the prevalence of mental ill-health among children and young people, 1.3 million children were deemed to have a diagnosable mental illness. The economic downturn, coupled with government austerity and exam stress, means this figure is now probably much higher. And with NHS England estimating that only a quarter of children and young people with a problem are ever seen by mental health services, the figures are just the tip of the iceberg.

Politicians are becoming more aware of the scale of the problem. The health select committee has begun a parliamentary inquiry into Camhs, which campaigners hope will push mental health in schools higher up the agenda when it is published this year. “What we need is a consistent, national system that is accountable. What we need is for Camhs to be transformed.” says Bell.

Harrison says more needs to be done to ensure heads and schools have access to effective support services. “Schools and heads are battered at the moment. We want the government to look at the evidence. It’s common sense. There is overwhelming evidence that students learn better and are more effective in environments where they are supported and their teachers are supported.”

For now, charities and campaign groups are having to help schools themselves. Young Minds offers guidance on its website for teachers and is about to pilot a helpline for school staff, while the anti-stigma campaign Time to Change is running a project promoting pupil wellbeing and offering practical guidance for teaching staff. “Pupils are under much more stress these days and so are staff, yet teachers don’t have training in mental health – or spare time,” says Moira Clewes, lead teacher on health at Sandwich technology school, Kent, one of the schools piloting the project. “We are breaking down misconceptions around mental illness. Students are opening up. Teachers are grateful for advice. You’d be amazed at the impact this is having.”

A Department for Education spokesperson points to a range of initiatives, including the MindEd website, launched in March, designed to help people working with children, including teachers, “to recognise when a child needs help and how to make sure they get it”. The Department of Health says it has a “priority” focus on children’s mental health and, among other things, has put additional cash in to “talking therapies”, adding that it is liaising with the DfE to improve links between schools and Camhs.

For Cunningham, while any help is welcome, she is adamant that “nothing short of a clear, coherent and properly funded approach nationally will work for schools and for children”.

• Some names have been changed

Loneliness twice as unhealthy as obesity for older people, study finds

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health problems, isolation, loneliness, older adults, support

Loneliness twice as unhealthy as obesity for older people, study finds

Loneliness can be twice as unhealthy as obesity, according to researchers who found that feelings of isolation can have a devastating impact on older people.

The scientists tracked more than 2,000 people aged 50 and over and found that the loneliest were nearly twice as likely to die during the six-year study than the least lonely.

Compared with the average person in the study, those who reported being lonely had a 14% greater risk of dying. The figure means that loneliness has around twice the impact on an early death as obesity. Poverty increased the risk of an early death by 19%.

The findings point to a coming crisis as the population ages and people increasingly live alone or far from their families. A study of loneliness in older Britons in 2012 found that more than a fifth felt lonely all the time, and a quarter became more lonely over five years. Half of those who took part in the survey said their loneliness was worse at weekends, and three-quarters suffered more at night.

Previous studies have linked loneliness to a range of health problems, from high blood pressure and a weakened immune system to a greater risk of depression, heart attack and strokes. In his recent book, Loneliness, John Cacioppo, a psychologist at the University of Chicago, says that the pain of loneliness is akin to physical pain.

Cacioppo said the world was experiencing a “silver tsunami” as baby boomers reached retirement age. “People have to think about how to protect themselves from depression, low subjective well-being and early mortality,” he said.

In light of the damaging health effects of loneliness, Cacioppo said people approaching retirement age might want to think twice about pulling up their roots and heading to fresh pastures to live out their retirement. He described results from the study at the American Association for the Advancement of Science meeting in Chicago.

“We have mythic notions of retirement. We think that retirement means leaving friends and family and buying a place down in Florida where it is warm and living happily ever after. But that’s probably not the best idea,” he said.

“We find people who continue to interact with co-workers after retirement and have friends close by are less lonely. Take time to enjoy yourself and share good times with family and friends. Non-lonely people enjoy themselves with other people.”

The researchers found that some people were happy living a life of solitude. Others still felt lonely, and suffered the health impacts of loneliness, even with family and friends close by. The findings suggest that people needed to feel involved and valued by those near to them, and that company alone was not enough.

Caroline Abrahams at Age UK said the study added to a growing body of research showing that being lonely not only made life miserable for older people, but also made them more vulnerable to illness and disease.

“It’s time we took loneliness seriously as a threat to a happy and healthy later life. We need to do more to support older people to stay socially connected. This is a big part of our job at Age UK and everyone can help by being a good friend or neighbour to the older people they know,” she said.

Local branches of Age UK help older people through befriending schemes and other services that include home visits and phone calls for people who are feeling lonely or isolated, she added.

Special report: Intersex women speak out to protect the next generation

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adults, androgen insensitivity syndrome (AIS), atypical genitalia, Children, chromosomes, disorder of sex development (DSD), gender, hypospadias, Identity, internal sex organs, intersex, operations, support, surgery, treatment, Young adults

Special report: Intersex women speak out to protect the next generation

It has taken Holly Greenberry, Sarah Graham, Dawn Vago and Elizabeth Jo Roberts years to go public with their stories. Born into a world that insists on dividing people into two sexes, they did not always know how they fitted in. They were born to typical families in typical areas of Britain, but none of them developed into typical male or females. They are intersex.

An estimated one in 2,000 babies is born with an intersex condition or a (controversially named) disorder of sex development (DSD), which means that they are born with a reproductive or sexual anatomy that does not fit the typical definitions of female or male. This can include atypical genitalia, chromosomes or internal sex organs.

The women argue that their very existence has been “eradicated” by British society. Generations of children have been operated upon to “normalise” their genitals or sexual anatomy, while official documentation, from birth certificates to passports, requires a male or female box to be ticked.  They argue it’s one of the last “human rights taboos” in the western world.

The women have a type of androgen insensitivity syndrome (AIS), which means they have XY chromosomes, but are partially or completely insensitive to testosterone – they are all infertile.

The group has come together to launch a campaign, calling for the Government to urgently review the way intersex people are treated. Following on from Germany’s decision to allow newborn babies to be registered as neither male nor female, their recommendations include the option to leave the sex on British birth certificates blank, measures to protect babies or young people from irreversible and non-consensual treatment and surgery, better emotional support and increased education.

“We are at a tipping point,” said Greenberry, co-founder of Intersex UK. “Most intelligent human beings would be completely surprised and utterly dismayed at the civil inequality and human rights abuses that healthy intersex children and young adults are facing.”

She added: “We need to sit around the table with the Government because we have lived through it. We are positive role models, and professional and intelligent women, who want to represent the needs of children so that the problems we experienced aren’t replicated.”

In the 1960s, it became the norm to operate on children with atypical sexual anatomy at a young age. Doctors assigned the child’s gender and operated to reinforce it. Although attitudes started to change around the turn of the millennium, and clinicians say they have moved to a more “multi-disciplinary” approach, there is still no record of the number of operations carried out, according to Professor Sarah Creighton, consultant gynaecologist at University College London Hospitals.

This year, the UN Special Rapporteur on Torture condemned non- consensual surgery on children to “fix their sex”, saying it could cause “permanent, irreversible infertility and severe mental suffering”.

XXXora, a 33-year-old intersex artist from London, who supports the women’s campaign, refused an operation. She was born with ambiguous sex organs and raised as a boy, but describes herself as “super-feminised from the beginning”. She said: “I never had surgery or hormones. We talked about it, but then I wouldn’t be me. I don’t want to morph into a blue or pink box; I want to stay in my silver box.”

But the campaign is not all about surgery. Certain intersex people, such as Greenberry, are struggling to correct the sex marked on their birth certificates, which makes it impossible to marry and more difficult to adopt children.

Lord Wilf Stevenson, opposition whip and former special adviser to Gordon Brown – who has a more common DSD called hypospadias – supports the campaign and has raised concerns with ministers. “The issue is that the current law has been overtaken by medical technology,” he said.

There is also a need to provide long-term emotional support for intersex people. Ellie Magritte (not her real name), the mother of a girl with AIS and a member of the support group DSD Families, said adults “need and deserve much greater investment in adult DSD care, focusing not on gender, genitals and genetics, but on health, wellbeing and happiness”. She said not all people with a DSD define themselves as intersex, but added: “The main challenges for families and kids is the social context in which we live with these conditions.”

Pia Clinton-Tarestad, head of specialised commissioning at NHS England, said that the NHS is “working to assess the services we commission for intersex people”, and that it understood that “issues surrounding the timing of, and consent to surgery, are controversial”. She added that best practice involves “co-operation and agreement” between child, parents and a multidisciplinary clinical team.

Holly Greenbury

When Holly Greenberry was born, almost four decades ago, doctors spotted a degree of sexual ambiguity. She has XY chromosomes, but also partial androgen insensitivity syndrome, leaving her partly insensitive to testosterone. She was assigned a male sex on her birth certificate, but she did not develop secondary male characteristics during puberty. She knew her gender was female and underwent treatment and surgery throughout her teens. Now, the businesswoman, from south-west England, is in the process of adopting a child. Because she is unable to change her name or sex on her birth certificate, adoption is harder and marriage impossible.

“I’ve never been completely male nor completely female in my genetics. I didn’t masculinise the way a male was expected to, and my body feminised in certain areas. I didn’t have the words to express myself; I didn’t know how I fitted in. It left me feeling really isolated and, while I tried to identify as male, I couldn’t do it. It was like having a series of repetitive panic attacks. Surgery was horrifically damaging and led to huge number of follow-up surgeries. It all could have been prevented if there had been more medical understanding and if there had been less haste in trying to guess which label best fitted. I should have been allowed to be an ambiguous teenager with the freedom to express my natural gender.”

Dawn Vago

Thirty-three years ago, when Dawn Vago was born, she looked like a typical baby girl. But when she was a young child, doctors told her parents that she had testes which would have to be removed. The married singer and programme director from Warrington, Cheshire, is genetically XY and has complete androgen insensitivity syndrome, which means she is totally insensitive to testosterone. She has been on oestrogen replacement therapy since she was 11.

“The doctors told my parents there was no one else in the UK with this condition. I felt alienated from all of my classmates. I always identified very much as female, but had issues accepting myself. When I first read my file and saw my diagnosis, my world completely exploded. I found a support group and all of a sudden, felt like I wasn’t alone. The moment of joy turned into anger. I was in my early twenties and had spent my whole life and childhood feeling alienated. I realised that it doesn’t have to be this way.

“The doctors told my parents that they should push me into a career and make me become a busy woman, so maybe I wouldn’t have time to settle down and have a family. They said I would find it very difficult to find a partner. Two and half years ago, when I walked down the aisle to my incredibly handsome husband, deep inside I was sticking a middle finger up to the entire medical establishment. I am very proud of who I am and I love my body, but I hate the journey that I’ve been on.”

Elizabeth Jo Roberts

Elizabeth Jo, a 29-year-old freelance journalist from Edinburgh, was brought up as a girl. At three years old, when doctors discovered undescended testes, they removed them without her parents’ consent. She was told at the age of 10 that she was infertile and, in her mid-teens, that she had androgen insensitivity syndrome, having been born with XY chromosomes. She met other people with intersex conditions for the first time only a few weeks ago.

“My parents told me I couldn’t have children at 10 years old. I took it pretty badly. It’s like when you’re winded and all the air is sucked out of you. It destroyed my adolescence. I got bullied quite a lot. When I was 10 or 11, I was first given oestrogen pills, but I used to forget to take them, so I never really developed significantly.

“I struggled with identity issues throughout my adolescence and even in my twenties. I’ve left it late on in life to meet others like myself. It has been one of the best things I’ve done; emotionally cathartic. I suffered quite heavily from depression. I want to help others to not feel the same way. They don’t have to feel bad about themselves. Social change takes years to happen, but we should be living in a society where people don’t feel bad about their identity because they have chromosomes that are variations on the norm. They should have freedom to express themselves.”

Sarah Graham

Sarah, 44, did not find out the truth about her diagnosis until her early twenties.  The counsellor from Surrey has complete androgen insensitivity syndrome. She presented at birth as a baby girl and was raised as one, but she has XY chromosomes and was born with internal testes, instead of ovaries. When doctors removed them, at the age of eight, they told her they were removing her ovaries to protect her from cancer and  imminent death.

“They should have told my parents the truth about my diagnosis. The lies were enormously damaging to me and affected my life. They put me on oestrogen replacement therapy when I was 12 years old but, if they had left my body intact, I would have produced hormones naturally. Every six months, I was prodded and poked by an army of medical students.

“Once I saw my diagnosis, I felt like a total freak, like I didn’t belong, and was offered no support. I felt like the only person in the world with the condition and that no one would love me. I went into a massive period of self-hatred and self-destruction, which fuelled a drug and alcohol addiction. Children need to be able grow up intersex if they want and parents shouldn’t be so pressured to make a decision. We must be given the space to exist.”

Lack of support for parents who live in fear of their teenagers, study shows

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domestic violence, parenting, parents, shame, stigma, support, teenage violence, Teens, violence

Lack of support for parents who live in fear of their teenagers, study shows

Parents living in fear of their abusive and violent teenagers are being left without support because of a lack of understanding of adolescent violence directed at parents, according to the first academic study into the issue.

Data from the Metropolitan police revealed that there were 1,892 reported cases of 13- to 19-year-olds committing violence against their own parents in Greater London alone over a 12-month period from 2009-10.

Dr Rachel Condry, lead researcher at the University of Oxford, which carried out the study, said there was little support for parents in such circumstances from police, youth justice teams or other agencies.

“The problem has, until now, gone largely unrecognised, which can mean that parents can find it very difficult to get help,” she said.

“The parents we spoke to said they were stigmatised and felt ashamed – they were experiencing patterns of controlling behaviour that were similar to domestic violence. One woman told us she would get up in the middle of the night to make her teenager dinner because she feared the consequences if she didn’t; others talked about walking on eggshells.”

Britain’s incoming director of public prosecutions, Alison Saunders, warned last month that teenage violence in the home was a hidden aspect of domestic violence: “There is a lack of respect and a lack of regard for authority. When I was growing up the thought of striking a parent was beyond the pale. Is that peers? Is that TV? Is that the general environment in the house? You are not born to commit domestic violence.”

Nicola, a mother in West Yorkshire who did not want to be named, said her daughter first started to behave violently towards her when she was 13. “She’d push me, punch me, lose her temper and smash the house up – it got to the stage where I was scared stiff,” she said.

“I thought it was me, my mothering skills. People were asking me why I couldn’t control her, but what was I supposed to do? Beat her up?”

Nicola was sent on a parenting course, but felt there was no one to help her. “I’ve got three other kids and none of them were like this – it wasn’t like I didn’t know what I was doing,” she said.

The study, co-authored by Caroline Miles, found that 87% of suspects in the London study were male and 77% of victims were women, although fathers could feel more reluctant to report the issue, said Condry.

The study found that, in the reported cases analysed, 60% of victims were classified as white European, while 24.3% were African-Caribbean. It says: “Families reporting adolescent-to-parent violence are likely to be at the lower end of the socioeconomic scale”.

Of those who recorded a profession, 46.7% were unemployed, 11.6% described themselves as housewives, while 3.4% were teachers and 2.9% were nurses.

Condry said it was a problem that could hit families in any demographic. “It is not the fact of being a single parent that is causing this issue, but parenting an adolescent is difficult and perhaps if a parent is on their own there is more potential for things to go awry.” The study found that a range of issues, including exposure to domestic violence, peer influence, mental health issues and drug problems had played a role, but there was no one reason for adolescent violence against parents.

“There may be issues around what we think of as poor parenting but many families we spoke to did not have those type of histories – that is uncomfortable for society, but we have to get a handle on the complexity of this issue,” she said.

When asked what she thought had provoked her daughter’s behaviour, Nicola said: “She has always seen me dominated, but I’m having counselling now and I’m starting to stand up for myself.”

Eventually she got support from the Rosalie Ryrie Foundation, a charity that deals with family violence. “They were fantastic; they showed me different techniques and it’s much better – she still loses her temper but she’s not as violent,” she said.

“It’s hard to ask for help. Other people should remember that it’s easy to say stand up to them, but it’s much more difficult when you are in that position.”

Condry said: “We want our victims to be entirely blameless. We think parents should be in control of their own children – but this is not an issue that can simplistically be blamed on bad parenting.”

I was sold by Mum and Dad to make images of child abuse

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abuse, Children, dissociation, family, parents, relationships, sexual exploitation, support, Trafficking, trauma

I was sold by Mum and Dad to make images of child abuse

One of Raven Kaliana’s earliest memories is being taken to a family portrait studio by her parents, at around the age of four. The studio was in the basement of a department store in a town 50 miles from their home. Once they had arrived, they waited for another couple to arrive with their own child.

“Would you like to have your picture taken with this cute little boy?” her mother asked, before the parents left the kids with the photographer and retired to the cafe upstairs. But while they sat eating ice cream, the images being made in the studio down below were far from happy family portraits. Raven and her companion had just been sold into the child abuse industry.

It was to be the beginning of a 15-year ordeal, which saw Raven regularly trafficked by her parents and other members of an organised crime ring from her home in a middle-class suburb in the American north-west to locations all over the US and abroad. In her teens, the crimes were often perpetrated in Los Angeles, where many film studios provided ample opportunity for the underground child abuse industry in the 70s and 80s.

Her father, precariously self-employed after losing his teaching job, was violent towards her younger brother, but since she had become the family breadwinner, Raven was granted a peculiar status. “My father always favoured me because I brought in the money – I was supporting our whole family. My younger brother was jealous because of my dad’s special treatment of me.

“My father was also quite affectionate towards me whereas he would beat my brother to a pulp. Although he did hit me, he wanted me to stay intact because the less scars I had, the more I was worth.”

Inevitably, as she grew older, Raven’s value to her abusers decreased and subsequently the kinds of films she was required to take part in became more extreme and violent.

Yet from a young age, she had learned from her parents to rationalise and deny what was going on within the family. “It’s the same way that someone who has a problem with alcohol will rationalise their behaviour – ‘It’s only this many drinks. It’s before noon but, oh well, just today’.

“I remember my mother saying things like, ‘Oh, they’ll never remember it,’ like people do when they get their babies’ ears pierced. I told myself that my parents meant well, that what I was going through was what was necessary to help my family. It was paying our mortgage.”

As we sit talking in a central London cafe, there are two large suitcases on the floor next to us, both full of puppets she has made. A graduate of the puppetry course at the Royal Central School of Speech & Drama in London, Raven turned to this artform as a way of telling her story without the gaze of an audience focusing on her directly – something she finds too uncomfortable.

Her adult life has been driven by the belief that it is important for survivors of child sexual exploitation and trafficking to tell their stories, in order to make people realise that these aren’t crimes that happen “somewhere else, to someone else”. She moved to the UK to create Hooray for Hollywood, an autobiographical play in which the children are represented by puppets, while the adults – their parents – are only shown up to waist height, from a child’s eye view. This critically acclaimed drama has toured the UK, Poland and France, and has been made into a film.

One of the most shocking aspects of Hooray for Hollywood is the banality of the adults’ conversation, as they rationalise the choice they have just made to sell their children, from the cosy confines of a cafe. These appear to be ordinary people, struggling a little to make ends meet; not monsters or weirdos, but the kind of people who might be your nextdoor neighbours.

“You hear about a perpetrator being processed in a certain way, you hear about the police getting hold of the images, but you don’t hear about the reality for the children in those images – whose children are they? How did they come to be in this situation? And how have they been traumatised or damaged by what happened?”

Through her organisation Outspiral, Raven recently launched a national campaign to raise awareness of sex trafficking and familial abuse. She now uses the film of Hooray for Hollywood for public education and training for professionals working in social services, education, law enforcement and children’s charities.

The biggest challenge, she says, is getting the bystanders in the child’s life – neighbours, relatives, teachers, care workers, counsellors – to consider the possibility that a child might be a victim of this form of abuse. Child abuse is such a taboo subject, and the concept of parents being complicit in the crime so unthinkable, that frequently there is a failure to recognise that it might be going on. Yet since Raven’s childhood, the internet has led to an explosion in the industry, which now has a worldwide market value of billions of dollars, according to the UN.

Britain’s Child Exploitation & Online Protection Centre, a division of the police, says the number of indecent images of children in circulation on the internet runs into millions, with police forces reporting seizures of up to 2.5m images in single collections alone, while the number of individual children depicted in these images is likely to be in the tens of thousands. The commonest way that offenders found their victims was through family and personal relationships.

A report by the NSPCC highlighted the particular psychological suffering that children who have been sexually abused within the child abuse industry endure, especially through the knowledge that there is a permanent record of their sexual abuse: “There is nothing they can do about others viewing pornographic pictures or films of themselves, and sometimes their coerced sexual abuse of others, indefinitely.”

For Raven, the psychological effects of her abuse have been extreme. From an early age she began to experience dissociative amnesia – a psychological phenomenon common in victims of inescapable trauma, in which painful experiences are blocked out, leading to gaps in memory. “I started putting things into little rooms in my mind, and it was like: OK, we don’t look in that room,” she says. “When there’s no relief, there’s no one stepping in to save you, and it’s clear you’re just going to have to endure something, then your mind just does that. As a child, dissociation is a serious survival advantage, but in adulthood it can become a disability.”

It was at the age of 15 that the coping mechanisms of denial and dissociation began to break down. “At school, I started getting flashbacks – like remembering being in a warehouse the night before – and I could feel in my body it was true, but it was terrifying because I didn’t want those things to be true.”

Astonishingly, she passed through most of school without anyone picking up on what was happening at home. “I got good marks at school, so teachers tended to think everything was fine. Most survivors I’ve known who experienced extreme abuse did very, very well at school, actually, because that was their sanctuary, a place they could go to be safe.”

Eventually, however, a teacher noticed that Raven was getting thinner. Her mother, by now separated from her father but still facilitating the abuse, had simply stopped buying food for her. “The teacher invited me to stay after school and talk with her one day, and she asked, ‘Tell me the truth, are you anorexic? Bulimic?’ And I started laughing.”

Raven confided some but not all of what was happening at home, but begged the teacher not to report it for fear of reprisals. What the teacher did do, however, was to help her find the wherewithal to move out of home eventually, get a job in a restaurant, and start saving up for college.

At university, Raven finally made a break from her family, changed her name and started to get counselling – the beginning of a long road to recovery that still continues. “I got into a support group for rape survivors, and it was a great help because all of a sudden I was around other people healing from abuse, too. It also gave me some perspective about how the things that had happened to me were really on the extreme end. I saw people completely devastated by one experience of being raped by a stranger, so it was sobering to realise, ‘Oh, I’ve been raped by hundreds of people.'”

Once she was in a safe environment, finally the rage about what had happened to her bubbled to the surface. “I couldn’t believe how angry I was when I first escaped – so angry. In one support group they let us take a baseball bat to a punching bag and told us to think about a specific abuse event and imagine that we were fighting back against it, and that was very helpful.”

She also saw an integrative bodywork therapist, who used touch, guided movement and vocal expression. “Her premise was that post-traumatic stress is a physical reaction in your body, and that reconnecting the symptom to the source helps you let it go, helps you release it, and that you don’t have to talk out every single thing that ever happened to you. It was very helpful for me because there were a lot of strange things that my body was doing. For example, I used to find any kind of physical touch excruciating – even if someone brushed me in the street I would shudder. She told me that was called armouring, which happens when your body makes a shield out of its muscles to protect the bones and internal organs during physical abuse.”

The therapy made it possible for her to move on and start to enjoy life. “I realised that it is possible to get your life back. I started to gain an appreciation for life and a recognition that I only have so many breaths, so I’ve got to use them well.”

But Raven believes she will always need counselling and that her experiences have made it difficult not to fall into a pattern of emotionally abusive romantic relationships.

Perhaps surprisingly, sex has not been a significant issue, but love is inextricably connected for her with betrayal, as the people who were meant to love her most as a child were the ones who orchestrated her abuse.

Yet, incredibly, she says she felt love for her parents as a child and still does, although she has cut all contact with them. Despite their behaviour, she believes they did love her.

“When I screen my film, a lot of times in the Q&A session afterwards people want to know: how could parents do this to their own children? I tell them that abuse is generational: my parents were also abused themselves, so that was normal to them. They had dissociated in the same way I did; they were in denial. Unlike my generation, they didn’t have access to counselling when they were young, and weren’t born in a time when child abuse was beginning to be acknowledged by society. It’s important to recognise that they weren’t born evil – they were damaged.”

Raven thinks that the way in which child abusers such as Jimmy Savile are demonised is counterproductive. “Demonising the perpetrators elevates them to the realm of the surreal. We need to shift that, so people recognise that they are very sick humans and that there’s a context for their crimes.

“Only then can we tackle the source of this suffering.”

 Outspiral.org.uk

Students stay silent about mental health problems, survey shows

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anxiety, counselling, help, mental health issues, self-harm, stress, students, support, treatment, university

Students stay silent about mental health problems, survey shows

Universities should do more to encourage students with mental health problems to seek help, a leading charity has warned.

More than a quarter (26%) of students who say they experience mental health problems do not get treatment and only one in 10 use counselling services provided by their university, according to a National Union of Students (NUS) study.

Of the students surveyed by the union, one in five say they experienced mental health problems while at university. This is in line with national statistics estimating that in any one year 23% of British adults experience a mental disorder.

Those who do experience mental health problems cite coursework deadlines (65%) and exams (54%) as triggers of distress. Financial difficulties (47%), pressures about “fitting in” (27%) and homesickness (22%) also contribute to mental ill health.

Stress is one of the most common symptoms of distress (80%), with many students also reporting a lack of energy or motivation (70%), anxiety (55%) and insomnia (50%). Some 38% experience panic, while 14% consider self-harm and 13% report suicidal thoughts.

NUS researchers admit that their survey was self-selecting and may exaggerate the prevalence of mental health problems among students. But Hannah Paterson, NUS Disabled Students’ Officer, says the “primary concern” is that very few of the students experiencing distress speak about their problem.

Of those who do experience mental health problems, 64% do not use any formal services for advice and support.

Students are more likely to tell their friends and family about feelings of anxiety, than they are to approach a doctor, academic or university counsellor.

Paul Farmer, chief executive of Mind, says this may be because of the stigma attached to mental illnesses. He adds that universities should do more to reach out to students.

“Higher education institutions need to ensure not just that services are in place to support mental wellbeing, but that they proactively create a culture of openness where students feel able to talk about their mental health and are aware of the support that’s available.

“Opening up to friends and family can help those feeling stressed or anxious, but anyone experiencing suicidal thoughts or consistently feeling down may have an enduring mental health problem, so it’s best they visit their GP. Nobody should suffer alone.”

Poppy Jaman, chief executive of Mental Health First Aid England says the NUS’ findings are unsurprising: “The student community is considered high risk for mental ill health, with exams, intense studying and living away from home for the first time all contributing factors.

“Where symptoms of poor mental health are spotted early and appropriate support and treatment is put in place the subsequent rate of recovery is significantly improved. Much more needs to be done within educational settings to improve the prevention and intervention of mental ill health.”

Stroke survivors and their families left to deal with the emotional impact alone, says report

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anxiety, carers, confidence, Depression, family, relationships, stress, stroke, support

Stroke survivors and their families left to deal with the emotional impact alone, says report

Stroke survivors and their families feel abandoned by health and social services after being left to deal with the emotional impact of stroke alone, a report reveals today.

The report, ‘Feeling Overwhelmed’, published by the Stroke Association, marks the beginning of Stroke Month and details the emotional strain of strokes on survivors and families after they have left the hospital.

More than half of survivors experienced depression and two thirds anxiety, in addition to lack of confidence and fear of recurrent stroke, the association says.

A high percentage of stroke carers are also reported to have experienced depression, stress, anxiety and frustration. Relationships are proven to suffer, with almost three in ten couples separating or considering it following stroke.

Of more than 2,700 people surveyed at the end of last year, 79 per cent claimed to have received no information or advice on how to cope with the emotional consequences of strokes.

Claire Whitehouse, 23, from Bournemouth, suffered a stroke when she was 19. Following her release from hospital, Claire suffered from depression and anxiety which also led to anorexia. She said:  “I wish someone, when I was in hospital, gave me a big leaflet with everyone I’d need to contact and said This is what you’re going to experience and this is the group you need to go to’. We need some information to tell us what’s going on.

“I can push myself to become physically able, but emotionally it’s much harder.”

In response to the findings, the Stroke Association is calling for psychological and emotional support to be as integral to recovery as the physical rehabilitation. It wants information and support to be accessible to everyone, survivors and carers, who have been affected by the illness.