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Tag Archives: anxiety

Gargoyles, tarantulas, bloodied children: Research begins into mystery syndrome where people see visions of horror

15 Tuesday Feb 2022

Posted by a1000shadesofhurt in Visual Impairment

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anxiety, blindness, charles bonnet syndrome, Depression, hallucinations, isolation, mental health issues, neuroscience, stress, treatment, visions, visually impaired

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Gargoyles, tarantulas, bloodied children: Research begins into mystery syndrome where people see visions of horror

Estimated one million visually impaired people in UK are thought to experience bizarre ultra-lifelike hallucinations – including spiders crawling from books and Victorian families appearing in crowds.

The first time Dr Amit Patel saw the girl in his home he was so astonished he fell down the stairs.

“She was so vivid,” he remembers today. “I could see the detail on her dress. There was blood smeared on her face.”

A month earlier, in November 2012, the former A&E medic had gone suddenly blind after catastrophic haemorrhaging in both eyes.

As he attempted to negotiate a world without sight, the girl – or rather a crystal-clear vision of one; white dress, black hair, bloodied and bruised – appeared without warning. And she has been doing so ever since.

“I can be working, walking down the street, with the kids, and she’ll suddenly be there,” the 40-year-old father-of-two says. “She once watched me change my daughter’s nappy. She’s always on trains.”

This is Charles Bonnet Syndrome – and an estimated 1 million partially sighted and blind people in the UK are believed to live with it.

They see – often on a near daily basis – intensely real, hyper-detailed visions. Sometimes these are benign: flowers sprouting, musical notes hanging in the air or rainbows forming.

But for many – for reasons which nobody understands – the scenes come tinged with horror. Tarantulas crawl out of books, gargoyles appear amid friends, zombies turn up in homes. In an online post, one UK sufferer, describes seeing a person crumble to dust in front of them. Dr Patel likens his visitor to the girl in The Ring. “Used to love that film,” he says today. Now, he’s less enamoured.

“Something I hear a lot is it’s like being inside a horror movie,” says Judith Potts, founder of Esme’s Umbrella, the UK’s only charity dedicated to the condition. “People know it’s not real but they can’t switch it off. There is no cure. They cannot escape.”

A major study being carried out by neuroscientists at the University of Oxford will this summer begin investigating what might cause CBS. In doing so, they hope to, firstly, destigmatise an illness which many are believed to suffer with silently for fear their sanity may be questioned, and, secondly, lay the groundwork for finding an eventual treatment.

Crucially, while it has long been established that the syndrome is to do with the eye’s interaction with the brain – as opposed to being a form of psychosis or dementia – the research will aim to establish what exactly is happening within that process.

“It is so important,” says Ms Potts. “This affects every part of people’s lives. If you wake up in a morning and see a tiger in your doorway that’s so real you can see the saliva on its teeth – that’s just one example of someone I spoke to recently – if you see that, it is so terrifying that, even though you know it’s not real, the anxiety puts huge stress on your life.

“Some people won’t go out as much because they don’t want to have these visions in public, or they become depressed. They have accidents. You can imagine it’s rather distracting suddenly being confronted by a Victorian family as you walk down the street.”

She herself founded Esme’s Umbrella in 2015 because her mother – the Esme in question – had suffered with the condition but found nowhere to turn: “A wonderful lucid woman who did the cryptic crossword everyday but who also happened to see gargoyles jumping around her kitchen,” notes Ms Potts.

Charles Bonnet Syndrome itself was first identified in 1760 by the Swiss naturalist and philosopher whose grandfather – a sane and cogent man – confided in his grandson that he had started seeing birds he knew could not possibly be there.

Yet, perhaps, because the condition appears to cause no apparent physical or mental deterioration, research has been sparse and wider knowledge of it remains hugely limited.

Despite estimates that half of all visually impaired people in the UK suffer – a figure put forward by the King’s College London neuroscientist Dr Dominic Ffytche – most have never heard of it until they are diagnosed. It was only four years ago, indeed, that the Royal College of Ophthalmologists started advising its doctors they should ask patients as a matter of routine if they experienced hallucinations in a bid to better understand the syndrome.

The fact the visions are so often characterised by something vaguely dreadful is, one expert told The Independent, “beyond the current limit” of scientific understanding.

Stress, isolation and anxiety may spark the visions, some believe. But even this is open to interpretation – because the visions probably increase stress and anxiety levels.

“The first time it happened I thought I was losing my mind,” says Arthur Anston, a 71-year-old retired sales director, as he describes an unknown person suddenly appearing as he travelled in a car with his wife.

“They started very modern-looking, then their appearance went back in time – Victorian, Roman – until I had a prehistoric man looking at me,” he adds.

So scared was he that his son-in-law immediately took him to hospital. “No one ever told me when I started losing my sight this might happen,” the grandfather-of-two from Manchester says. “I’d never heard of CBS. All I knew was I was seeing something that no one else was. It was disturbing.”

It is a word commonly used by many of those diagnosed with the condition.

For Nina Chesworth, the first time she saw visions was just days after suffering the trauma of losing her sight during a home accident in 2018. Kaleidoscopic rainbows and coloured patterns suddenly appeared as she lay in hospital, eventually progressing, over the next few weeks, into unicorns.

“I’m a graphic designer by training,” the 38-year-old mother-of-one says. “So, I was a bit like, ‘Well, this is interesting’. I would observe all these colours and patterns. I found them comforting in a way. I still do sometimes.”

At one point she saw Danger Mouse. “I loved Danger Mouse,” she says. “That was lovely.”

Then, however, came the zombies and snarling dogs.

“I was sat on the sofa at home the first time,” the mother-of-one from Manchester recalls. “I was too scared to move for hours. It’s not like you can shut your eyes and stop seeing it. It stays right there in front of you.”

Now she has got used to the strange mix of visitors she is less concerned – “sometimes I sit studying them” – but they have caused her accidents, led to plans being cancelled and can make the world feel overwhelming.

“As a blind person you rely on all your other senses but when the visions start, they can take over,” she says. “They are incapacitating, even when it’s not bad stuff you’re seeing.”

It is for this exact reason that Esme’s Unbrella and the Fight For Sight charity are now funding the new research.

Pertinently, with 4 million people in the UK set to have some form of visual impairment by 2050 – a number which would result in a possible 2 million people with CBS – experts say it is more crucial than ever to get a grip on the syndrome.

“So much more needs to be done to understand this,” says Sherine Krause, chief executive of Fight For Sight. “With a better understanding of the causes, we will be one step closer to developing a treatment and a cure.”

The study will see some 20 people – 10 with CBS and 10 without – have certain chemicals in their brains measured and monitored over a period of time.

“By looking at that, we can see if there may be an imbalance in chemistry in the visional system that may be a cause of these really weird visions,” says Holly Bridge, a professor of neuroscience leading the study. “If we can establish that, then it can become possible lead to treatment because you could look to develop ways of changing those chemical balances. In the very long term, it may well be that you could develop an appropriate drug to keep those chemical levels in proportion.”

Early results will come within 12 months and a fully published paper within 18 – but a treatment, of course, might not arrive for years.

All the same, back with Amit in London – flanked by trusty guide dog Kika – he longs for the day when the girl from The Ring is no longer a regular visitor. He would not, it is safe to say, miss her.

“I was thinking the other day,” he says, “she’s been in my life longer than my children. It would be nice now to be rid of her”.

How mental distress can cause physical pain

14 Sunday May 2017

Posted by a1000shadesofhurt in Uncategorized

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anxiety, Depression, depressive symptoms, diagnosis, distress, emotional distress, emotions, gastrointestinal issues, mental health issues, nausea, numbness, palpitations, panic, panic attacks, physical aches, physical pain, physical symptoms, psychological symptoms, stomach pains, stress

How mental distress can cause physical pain

It took Gemma* years to realise why she vomiting three of four times a week. She wasn’t suffering from some mysterious stomach illness. Instead, it was her mental health deteriorating.

“I have generalised anxiety disorder and panic disorder. I actually had physical symptoms first, long before I even knew what panic attacks or anxiety were,” the 24-year-old student based in London tells The Independent. “I suffer particularly badly from gastrointestinal issues. I spent years throwing up three or four times a week, ending up in hospital, with no real discernible ‘physical’ cause. The cause was anxiety, expressed physically.”

Gemma believes that her condition went undiagnosed for so long because of how mental and physical conditions are too often treated as mutually exclusive, when they are in fact inextricably linked.

“I think people very much misunderstand the link between physical and mental health,” she goes on. “I was one of those people. I didn’t even realise they could be connected when I was a teenager. I thought I was relaxed. Anxiety was the last thing I thought I was suffering from. But I was ignoring a lot of stress and was poor at acknowledging my own emotions. That stress had to come out somewhere, and I almost feel like it was my body trying to get me to listen.”

Now, Gemma knows that anxiety can cause her severe stomach pains. Or that panic attacks are what most often fill her stomach with nausea, cause her arms and legs to go numb, and her heart to palpitate.

Similarly, Courtney*, a 25-year-old publicist based in London, says her depression causes her to feel lethargic and sluggish and her bones and joints stiff and achy.

“The bigger problem with physical symptoms is for the anxiety side of things. Outside of panic attacks, a bad flare up of anxiety gives me absolutely stunning headaches with blurred or double vision, which often makes it hard to work – especially at a computer screen,” she tellsThe Independent.

And as the stigma of suffering from mental illness is talked about more widely, these comparatively nuanced aspects of understanding health are what need to be tackled next, say experts.

“The idea that mental illness is ‘all in your head’ is not only outdated, but can make us blind to the physical symptoms that can be a sign of mental health problems,” Rethink Mental Illness spokeswoman Nia Charpentier tells The Independent.

“For example, if you have anxiety, you may experience a fast heart rate and sweating; or for someone living with Post Traumatic Stress Disorder, the flashbacks can cause aches and pains, or make you feel sick. Similarly, depression can affect your appetite, causing you to either lose or gain weight.

Eating disorders such as bulimia and anorexia are perhaps the most obvious ways that serious mental illness can affect a person’s physical health.

“In the case of eating disorders, these illnesses may well involve physical symptoms that can become increasingly obvious over time, depending on the specific illness. However, it’s very important to remember that these are mental illnesses at their root, and changes to behaviour and mood will probably be noticeable long before any physical signs,” a spokesperson for the eating disorder charity B-Eat stresses. “It’s vital that people are aware of these psychological symptoms as well as the physical ones, as the sooner someone enters treatment for an eating disorder, the better their chance of recovery.”

It is erasing this confusing that spurs the Mental Health Foundation on to campaign for health check to include mental health screenings.

“Men in their forties are routinely screened for their blood pressure and cholesterol levels, when they are more at risk of ending their life by suicide,” points out Dr Antonis Kousoulis at the Mental Health Foundation, adding: “It’s crucial that health screening cover the health of our minds as well as the health of our bodies.”

*Name has been changed

Body dysmorphic disorder: charity video reveals the image anxieties that can push people to the edge

11 Monday May 2015

Posted by a1000shadesofhurt in Body Image

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anxiety, appearance, BDD, body dysmorphic disorder, cbt, Depression, diagnosis, distress, isolation, medication, misdiagnosis, physical appearance, professionals, suicide

Body dysmorphic disorder: charity video reveals the image anxieties that can push people to the edge

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.

Don’t worry, be happy: overcoming worry may be key to mental health

07 Wednesday Jan 2015

Posted by a1000shadesofhurt in Uncategorized

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anxiety, beliefs, benefits, cbt, distraction, excessive worry, mental health issues, problem solving, worry

Don’t worry, be happy: overcoming worry may be key to mental health

Are you weary of “new year, new you” positive thinking exercises? Tired of trying to feel Tiggerish in the cold, dark, midwinter mornings? Why not try this quick experiment to redress the balance. All you have to do is imagine that something great has happened in your life: maybe you’ve run into an old friend; perhaps you’ve been promoted at work; or you’re about to head off on holiday. Now ask yourself what could go wrong. In what awful ways could it all fall apart? What disastrous chain of events might unfold? Don’t think solutions, think problems. Open the worry floodgates and allow yourself to be swept away.

As you’re likely to discover when you attempt this depressing little exercise, with a sufficiently negative outlook even the happiest moments in life can become a source of anxiety and stress. When we worry, we become preoccupied with an aspect of our lives, desperately trying to anticipate what might go wrong and what might happen if it does. Although we might believe worry is constructive, actually all it usually does is lower our mood. And when we start worrying it can be difficult to stop.

So worry can be an immensely powerful psychological mechanism, but might it also be a defining factor in the development of mental illness? Can studying it deepen our understanding of what mental illness is, how it comes about, and how it differs from psychological health?

As you’ll know if you read about the hoo-ha following publication of the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, the number of officially recognised psychiatric disorders has mushroomed in recent years, and now stands at around three hundred. That giant total has attracted a lot of criticism – and with some justification – but in fact many of these conditions are pretty similar. It is better to think instead of three main groupings of disorders: internalising (most commonly, depression and anxiety); externalising (addiction, for instance, or anti-social behaviour problems); and psychosis (with its characteristic symptoms often bracketed under the label of schizophrenia). However, even these three broad groupings share many of their causes, which has led some researchers to speculate that underlying and unifying all mental illness may be a single cause: the so-called “p factor of psychopathology”.

At the social level, we know that poverty, isolation, and negative life events all elevate the risk of mental health problems. But when it comes to the psychological p factor, there is increasing evidence that it may be excessive worry. When worry gets out of hand, it now appears, a very wide range of mental health problems can follow in its wake.

This kind of “transdiagnostic” approach represents a major shift in the way we think about worry. Traditionally, problematic worrying has been demarcated as a specific condition: generalised anxiety disorder. And in that box it has remained. (The exception to this rule is depression, for which persistent worry about the past is a recognised symptom. But it’s not called worry: it’s called “rumination”. “Worry” is defined as anxious thinking about the future.)

Yet real life seems to show a lamentable lack of respect for systems of psychiatric classification. Rather than being a separate disorder, excessive worry has been shown to play a significant role in the development and persistence of paranoid thinking, post-traumatic stress disorder, alcohol and drug dependence and insomnia. It has also been linked to the incidence of eating disorders.

The idea that many psychological problems have excessive worry in common seems plausible. As most of us know from bitter experience, worry brings the most unlikely – and unpleasant – ideas to mind, keeps them there no matter how hard we try to shake them off, and convinces us that the events we dread really may happen.

If persistent worry is potentially so damaging to our mental health, what can be done to combat it? Interestingly, we tend to worry less as we grow older. People aged 65-85, for example, report fewer worries than those aged 16-29. But besides simply waiting for the years to pass, the evidence is strongest for an adapted form of cognitive behavioural therapy. This relatively brief, one-to-one treatment is based on a detailed model showing how problematic worry is caused, maintained and overcome. Patients are helped to notice when they’re worrying, to interrupt this habitual thinking style, and then try alternative ways of reacting to life’s problems.

So far this kind of CBT has mostly been used with people suffering from generalised anxiety disorder. A recent meta-analysis of 15 studies, for example, showed that CBT was far more effective than other therapies (or than a non-treatment control) at helping people recover from generalised anxiety disorder and stay well.

But it is now beginning to be piloted for other conditions – the Oxford Cognitive Approaches to Psychosis Group, for example, is testing its efficacy in severe paranoia.

How does CBT tackle worry? For one thing, it helps people to re-evaluate their beliefs about its benefits. Like many of us, individuals who are prone to excessive worry tend to assume that it helps them. They may believe, for instance, that worrying helps them to anticipate and solve problems; that it provides the motivation necessary to tackle those problems; or that it prepares them for the worst if a solution can’t be found. They may even feel that by worrying about an event they can prevent it occurring – despite realising that it’s pure superstition. Learning to challenge these kinds of beliefs can be a huge step forward.

CBT also teaches us to confine our worrying to a regular set period of 15 minutes or so each day. When worrying thoughts arise at other times, the trick is to save them for later and let them go. “Expressive writing” can be effective too: you describe your worries in as much detail as you can, focusing on what it feels like, and resisting the temptation to analyse what’s causing your thoughts. And don’t underestimate the power of distraction: work out when you’re most likely to worry and plan a pleasurable, absorbing activity you can do instead.

Many of CBT’s techniques for tackling worry are not rocket science: with the right guidance we can all put them into practice. By doing so we’re not merely sparing ourselves hours of futile fretting. If excessive worry is truly the p factor it seems to be, we’ll also be addressing one of the key determinants of our mental health.

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

07 Wednesday Jan 2015

Posted by a1000shadesofhurt in Uncategorized

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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.

Explaining tokophobia, the phobia of pregnancy and childbirth

15 Monday Sep 2014

Posted by a1000shadesofhurt in Uncategorized

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anxiety, birth, childbirth, distress, fear, hyperarousal, labour, media, negative birth experience, panic, positive birth experience, post-birth PTSD, pregnancy, PTSD, social media, symptoms, tokophobia, trauma, treatment

Explaining tokophobia, the phobia of pregnancy and childbirth

For expectant mothers, it’s very normal to approach birth with a feeling of trepidation, particularly for the first baby. From the moment a pregnancy is announced, the average pregnant woman is inundated with horror stories of pain and long labours by supposed well-meaning friends, and it can be hard to focus on a positive birth experience when you don’t know what to expect.
But for some women, the fear of childbirth goes beyond trepidation into full-blown anxiety, panic and fear. Known as tokophobia, this phobia of childbirth affects somewhere between 3-8 per cent of pregnant women.
Symptoms include worries specifically about the pregnancy and birth, a fear of harm or death related to the birth, poor sleep, and a sense of hyper-arousal (rapid heartbeat and breathing, difficulty winding down). The fear of childbirth is a common non-medical reason for requesting a caesarean section, and women with this fear have a much higher rate of both caesarean delivery and use of epidural anaesthesia.
There is no clear path to developing fear of childbirth, but there are some risk factors that we know about. A history of anxiety or depression is one risk factor, as is a history of childhood abuse, be it sexual, physical or emotional abuse.

Some studies have also identified patterns with age, suggesting younger mums are more vulnerable, as are those with less education, and mums without a strong social network.

However, a recent study found that one of the biggest influences women reported on their fear of childbirth was the media. Hospital-based reality television programs and medical dramas often feature storylines with dramatic emergency situations during childbirth and this may be all women know of giving birth prior to the event.

We also know that around 95 per cent of pregnant European women report searching for pregnancy and birth information online, and social media and blogs hold the potential for the circulation of misinformation that may heighten fears rather than allay them.

There is another group of women who may find pregnancy and childbirth frightening due to related fears. One of the most common phobias in adults is blood/injury phobia, often including a fear of injections. Pregnancy and childbirth is hence very confronting for these women, who may faint or experience extreme distress at even routine blood tests throughout their pregnancy.

Researchers have found that for first time mothers, a positive birth experience can often relieve the fear of childbirth so that it is no longer an issue for future pregnancies. However, whether or not women start with a fear of childbirth, a negative birth experience can make them up to five times more likely to develop tokophobia for future pregnancies.

A negative experience of birth may be due to complications, feeling out of control, dissatisfaction with care providers, or just not having the birth that was expected. Between 2-6 per cent of women report post-traumatic stress syndrome (PTSD) following a difficult birth experience. PTSD is the disorder once known as ‘shell shock’ for its affliction of soldiers following war, and is characterised by nightmares and re-experiencing of the birth trauma, avoidance of all reminders of the birth, and hyper-arousal. Without treatment, PTSD can limit family size and cause problems in women’s relationships with their partner and their child.

While we may not hear much about tokophobia and post-birth PTSD, their prevalence suggests we do need to look out for women who may be suffering both before and after birth. In addition to the distress at the time, stress and anxiety during pregnancy are linked to a higher rate of preterm birth and later behavioural problems in children.

The good news is that like all anxiety disorders, the fear of childbirth and PTSD can be addressed and treatments are available. One of the most vital elements of treatment is education on birth, whether through the obstetric care provider, midwives, or antenatal classes. Knowing what to expect and having an agreed plan with your care provider can assist to overcome some of the irrational fears.

Linked to this, a supportive and trusting relationship with the care providers who will manage the birth is essential. This is not always possible as some obstetric settings do not allow for repeated contact with the same provider, but a relationship of trust will be more likely to create a positive birth experience.

When problems do occur in pregnancy and birth, a post-birth debriefing can be useful and may help prevent the development of PTSD symptoms. Understanding what went wrong and why things happened the way they did can help with processing the events and accompanying trauma.

As with other anxiety disorders, relaxation, light exercise and slow breathing can help to calm the body and relieve the hyper-arousal that comes with the fear of childbirth. A psychologist can assist with other anxiety management techniques that can help to minimise fears.

For those who find the idea of pregnancy and birth overwhelming, it is important to know that help is available and such symptoms can be successfully treated. The first step is confiding your fears so that those around you can start to support you through what could be a wonderful journey.

‘Running helps me with cope with post-traumatic stress disorder’

26 Tuesday Aug 2014

Posted by a1000shadesofhurt in PTSD

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anxiety, Depression, memories, PTSD, running

‘Running helps me with cope with post-traumatic stress disorder’

I am a runner – and I suffer from post-traumatic stress disorder. One of the many things I think about while I’m running, and also when I’m not, is the relationship between the two.

I have always loved to run, and I have fuzzy memories of running pretty much anywhere, anytime, as a child. We would spend family holidays in north Wales, and I remember galloping into the hills, pretending to be a horse, then sitting in the grass and watching a snowstorm move up the valley. Now in my 40s, running has become far more structured, and an essential contribution to my life and ability to manage my illness. Yet I find that some people are concerned about my need for it, which always surprises me, as it seems like a positive thing to do. One doctor recently asked me if it felt like I was running away and I answered: “What does it matter? It makes me feel better.”

Experiences of loss and repeated trauma from childhood resulted in an early onset of depression and severe anxiety, culminating in a complete breakdown at 27 from which I’ve never fully recovered. It took over 30 years of seeing multiple mental health professionals before I even had an explanation for my inability to get well (a correct diagnosis was only reached in my late30s). A good day for me is managing the walk to my son’s school, greeting teachers and other parents, then perhaps doing some food shopping, without having a panic attack. On a really good day, I might have a friend round for coffee and a chat, but by and large my life is isolated – and that’s OK. My wonderful husband enjoys taking the boys out, while I (for the most part) am the stay-at-home support. I have more than I ever dreamed possible.

Four years ago, my husband’s work took us to the US, where our second son was born, and shortly after that a friend introduced me to trail running. I have always felt at home in the mountains, and the Appalachians are breathtakingly beautiful. At first, I couldn’t manage more than a mile or two without stopping, but I nonetheless made the most incredible discovery. How to articulate this? As well as the powerful medicinal effect of being surrounded by nature, running makes life feel simple. Battling an illness such as mine is utterly debilitating all day, every day, year after year. There is no respite. Many people will know what I mean when I refer to having a dream where you are suddenly, sharply falling, causing you to wake with a jolt and a racing heart. I have this sensation many times a day while wide awake, for absolutely no visible reason – I am perpetually fearful. In addition to this, the depression (and grief) can be crippling: it slowly numbs your brain and sends your body into a state I imagine being rather like hibernation – an attempt to withdraw from the pain. Going for a run not only gets me physically moving, it also takes my thoughts out of the equation: all I have to do is keep putting one foot in front of the other and breathe.

Initially, my incentive was an 18-mile trail race up a mountain, with a total of around 5,300ft of ascent. Having been a 100-metre sprinter at school, this seemed like an impossible, if not ludicrous, goal, but it somehow represented my life. I knew a run of that magnitude was going to be physically and mentally exhausting, as well as painful, but I needed, at the very least, to survive it. It was a daunting challenge, and I was almost convinced that failure was inevitable, but I approached it by being scientific: reading, researching, asking advice and putting my trust in training. Even just getting out for a run could be next to impossible, due to my agoraphobia. Some runs would be particularly fast, with the extra injection of fear-induced adrenaline. And I had a very patient, kind partner for the weekend long runs, which I could never have done on my own.

On the day of the race, I kept my head down to avoid total panic among the crowd of runners at the start and set no time target: it was about getting to my family at the finish line and looking at the view from the top of the mountain; being, for once in my life, one of the achievers.

That was over a year ago, and we have now moved to yet another country, but I have brought the running with me, along with my race finisher’s shirt. Our new home backs onto 2,000ft of rugged hill, with rocky, brutally steep trails to the summit, from where miles and miles of mountain tops stretch away to the edge of the Earth. I embrace running in all weathers: sun, heavy rain, high winds, snow and hail, always with a considerable amount of ascent. As I fight my way up the climbs, I often imagine that the hill is my illness and I am going to slowly and steadily conquer it. Yet it never feels like suffering and, once at the top of the hill, I can reach out and touch the sky. At home, I am always struggling to stay afloat, fearing I will lose the battle with my illness and fail my husband and children, but all of that slips away when I am running. It is just me and the hills and some long-distant memories, and I always come home smiling and with my head full of stillness.

Mindfulness therapy comes at a high price for some, say experts

26 Tuesday Aug 2014

Posted by a1000shadesofhurt in Uncategorized

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anxiety, attention, breath, depersonalisation, Depression, health professionals, meditation, mindful living, mindfulness, mindfulness meditation, mindfulness therapy, mindfulness-based cognitive therapy (MBCT), NHS, side-effects, stress, teachers, training, trauma memories, vulnerability

Mindfulness therapy comes at a high price for some, say experts

In a first floor room above a gridlocked London street, 20 strangers shuffle on to mats and cushions. There’s an advertising executive, a personnel manager, a student and a pensioner. A gong sounds softly and a session of sitting meditation begins. This is one of more than 1,000 mindfulness courses proliferating across the UK as more and more people struggling with anxiety, depression and stress turn towards a practice adapted from a 2,400-year-old Buddhist tradition.

Enthusiasm is booming for such mindfulness-based cognitive therapy (MBCT) courses, which an Oxford University study has found can reduce relapses into depression by 44%. It is, say the researchers, as effective as taking antidepressants. It involves sitting still, focusing on your breath, noticing when your attention drifts and bringing it back to your breath – and it is surprisingly challenging.

Lifestyle magazines brim with mindfulness features and the global advertising giant JWT listed mindful living as one of its 10 trends to shape the world in 2014 as consumers develop “a quasi-Zen desire to experience everything in a more present, conscious way”.

But psychiatrists have now sounded a warning that as well as bringing benefits, mindfulness meditation can have troubling side-effects. Evidence is also emerging of underqualified teachers presenting themselves as mindfulness experts, including through the NHS.

The concern comes not from critics of mindfulness but from supporters, such as Dr Florian Ruths, consultant psychiatrist at the Maudsley hospital in south London. He has launched an investigation into adverse reactions to MBCT, which have included rare cases of “depersonalisation”, where people feel like they are watching themselves in a film.

“There is a lot of enthusiasm for mindfulness-based therapies and they are very powerful interventions,” Ruths said. “But they can also have side-effects. Mindfulness is delivered to potentially vulnerable people with mental illness, including depression and anxiety, so it needs to be taught by people who know the basics about those illnesses, and when to refer people for specialist help.”

His inquiry follows the “dark night” project at Brown University in the US, which has catalogued how some Buddhist meditators have been assailed by traumatic memories. Problems recorded by Professor Willoughby Britton, the lead psychiatrist, include “cognitive, perceptual and sensory aberrations”, changes in their sense of self and impairment in social relationships. One Buddhist monk, Shinzen Young, has described the “dark night” phenomenon as an “irreversible insight into emptiness” and “enlightenment’s evil twin”.

Mindfulness experts say such extreme adverse reactions are rare and are most likely to follow prolonged periods of meditation, such as weeks on a silent retreat. But the studies represent a new strain of critical thinking about mindfulness meditation amid an avalanche of hype.

MBCT is commonly taught in groups in an eight-week programme and courses sell out fast. Ed Halliwell, who teaches in London and West Sussex, said some of his courses fill up within 48 hours of their being announced.

“You can sometimes get the impression from the enthusiasm that is being shown about it helping with depression and anxiety that mindfulness is a magic pill you can apply without effort,” he said. “You start watching your breath and all your problems are solved. It is not like that at all. You are working with the heart of your experiences, learning to turn towards them, and that is difficult and can be uncomfortable.”

Mindfulness is spreading fast into village halls, schools and hospitals and even the offices of banks and internet giants such as Google. The online meditation app Headspace now has 523,000 users in the UK, a threefold increase in 12 months. But mounting public interest means more teachers are urgently needed and concern is growing about the adequacy of training. Several sources have told the Guardian that some NHS trusts are asking health professionals to teach mindfulness after only having completed a basic eight-week beginners’ course.

“It is worrying,” said Rebecca Crane, director of the Centre for Mindfulness Research and Practice in Bangor, which has trained 2,500 teachers in the past five years. “People come along to our week-long teacher training retreat and then are put under pressure to get teaching very quickly.”

Exeter University has launched an inquiry into how 43 NHS trusts across the UK are meeting the ballooning demand for MBCT.

Marie Johansson, clinical lead at Oxford University’s mindfulness centre, stressed the need for proper training of at least a year until health professionals can teach meditation, partly because on rare occasions it can throw up “extremely distressing experiences”.

“Taking the course is quite challenging,” she said. “You need to be reasonably stable and well. Noticing what is going on in your mind and body may be completely new and you may discover that there are patterns of thinking and acting and behaving that no longer serve you well. There might be patterns that interfere with living a healthy life and seeing those patterns can bring up lots of reactions and it can be too much to deal with. Unless it is handled well, the person could close down, go away with an increase in self-criticism and feeling they have failed.”

Finding the right teacher is often difficult for people approaching mindfulness for the first time. Leading mindfulness teaching organisations, including the universities of Oxford, Bangor and Exeter, are now considering establishing a register of course leaders who meet good practice guidelines. They expect mindfulness teachers to train for at least a year and to remain under supervision. Some Buddhists have opposed the idea, arguing it is unreasonable to regulate a practice rooted in a religion.

Lokhadi, a mindfulness meditation teacher in London for the past nine years, has regular experience of some of the difficulties mindfulness meditation can throw up.

“While mindfulness meditation doesn’t change people’s experience, things can feel worse before they feel better,” she said. “As awareness increases, your sensitivity to experiences increases. If someone is feeling vulnerable or is not well supported, it can be quite daunting. It can bring up grief and all kinds of emotions, which need to be capably held by an experienced and suitably trained teacher.

“When choosing a course you need to have a sense of the training of the teacher, whether they are supervised and whether they themselves practise meditation. Most reputable teacher training courses require a minimum of two years’ meditation practice and ensure that teachers meet other important criteria.”

The bizarre sleeping habits of Brits revealed: From sleep-walking to sleep-drawing

23 Saturday Aug 2014

Posted by a1000shadesofhurt in Uncategorized

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anxiety, drawing, dreams, families, painting, sleep, sleep deprivation, sleep-talking, sleepwalking, somnambulists, stress, writing

The bizarre sleeping habits of Brits revealed: From sleep-walking to sleep-drawing

A new study of sleeping habits in the UK has shown Brits are a restless bunch, with over 40 per cent talking in their sleep, and more surprisingly almost 10 per cent getting creative by drawing, painting or writing while in the land of nod.

In a survey of 2,000 UK adults, overall 42 per cent spoke in their sleep, with almost half of 25 to 34-year-olds continuing to natter away. It also revealed that women are more prone to sleep-talking than men, as 46 per cent admitted to the behaviour, in comparison to 35 per cent of men.

The study also showed that one in 10 people are somnambulists, or sleep-walkers. Sleepwalking usually occurs in a period of deep sleep during the first few hours after falling asleep.

While the exact cause is unknown, it seems to run in families, according to the NHS. Sleep deprivation, stress and anxiety, and drinking too much alcohol, taking recreational are among the factors that can trigger sleep walking.

The research commissioned by Ibis Hotels also gave in an insight into the mysterious world of dreams, with some 16 per cent of adults convinced that they had dreamt something that they claim later came true. Meanwhile, a quarter of those surveyed reported having a recurring dream for six months.

The peculiarities of sleepers across the UK were also revealed, as people in the North East were more likely to have recurring dreams, while a quarter of people in the same region admitted to dream cheating on their partners. But the Scottish appear to be the most self-conscious about their behaviour, as a fifth have had a sexual dream about someone and felt embarrassed to see them the next day.

Meanwhile, Londoners were more prone to having the same dreams as their friends and families on the same night. Residents of the capital were also more likely to be able to get back into a dream after waking up.

Facing up to rape: Victim speaks out about the ‘faceless’ crime

27 Tuesday May 2014

Posted by a1000shadesofhurt in Sexual Harassment, Rape and Sexual Violence

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anxiety, attention-seeking, awareness, educate, embarrassment, fear, humiliation, powerlessness, rape, report, sexual assault, sexual harassment, Sexual Violence, shame, stigma, violated

Facing up to rape: Victim speaks out about the ‘faceless’ crime

Up until two weeks ago, Francesca Ebel had never told anyone in her family – or indeed most of her friends – that she had been raped. Yet she has now gone public, and the response has been overwhelming.

There were no dark alleys or threats of knives. There were no dodgy areas of town or even strangers involved. And that’s the whole point, explains the 20-year-old student, who is in her first year of studying Russian and French at Cambridge University.

“It happened three years ago. I was 17 and at a party. I got drunk and so friends helped me up the stairs and into bed. It was there that I was awoken by a crashing noise and burst of white light. I realised that someone was wrenching back the duvet and clambering on top of me, frantically pressing his lips to mine. Then my legs were pulled apart and I felt a sudden, tearing pain.”

Even in her drunken stupor, Francesca knew instinctively that something was very wrong and tried to shove him off. She even said “No”. More than once. “But he ignored me, breathing heavily in my ear.”

When it was over, Francesca stumbled outside, to find him smoking and laughing with his friends, and in the days afterwards, he boasted and joked about their sexual encounter.

Suspecting that she would be branded, at least by some, as an attention-seeker and a liar, she did not accuse him of rape. In fact, even when she confided in a close friend, it didn’t occur to her to use the word rape. “How could I claim to have been raped when ‘rape’ conjures up such violent images? How could my experience possibly parallel brutalities such as gang-rapes in India? It was unthinkable. Mine was not a violent rape; my rapist’s motives were not hateful or destructive. Furthermore, I felt embarrassed, ashamed and humiliated. So I put it behind me and got on with my life.”

And to a large extent, she succeeded. “Thankfully, my enjoyment of sex has not been affected and I’ve flourished in functional relationships. So how could I even begin to claim to identify with other victims’ experiences?” she says.

But about a year ago, when Francesca was in a relationship with a lawyer, she told him what had happened. “He stared at me and said: ‘You do realise that that is legally rape. You said no and that you didn’t want it to happen’. It was the first time I saw things clearly.”

Shortly afterwards, Francesca started university and was struck by how many other women, including a close friend, talked about similar experiences – something that certainly doesn’t surprise Rape Crisis, the charity, which claims that an estimated 90 per cent of those who experience sexual violence know the perpetrator in some way.

“There was a major survey that came out last month, which found that more than one in 13 women at Cambridge University had been sexually assaulted and that the vast majority – 88 per cent – did not report it,” Francesca says. “The study got people talking about their own experiences.”

According to the survey, women at the university are routinely groped, molested and raped. Like Francesca, one of the rape victims explained that she did not report her attacker because she thought that nothing would come of it. “I have no reason to believe that my report will be taken seriously, be investigated or result in a conviction. On the contrary, I have every reason to believe that he would be acquitted,” the woman stated. A couple of weeks later, an article appeared in the Cambridge Tab – of which Francesca is news editor – on what to do if you are raped. “We had run a few anonymous stories of sexual assault in our publication, but this one, which was written by the brother of a rape victim, really got to me, because it listed all of the things that I wish I’d done at the beginning. Suddenly, I just felt sick of this feeling of frustration, powerlessness and stigma about what had happened to me and so many others, and I felt a need to speak out. So I did.

“By storing the incident up inside me, I had let it gnaw away at me – the questions, anxieties and fury had built up to a level which was almost intolerable,” she explains. “And perhaps most critically of all, I wanted to turn a negative experience into something constructive.”

Francesca’s article appeared in the next issue, on 17 May, titled “There are people behind recent rape statistics and you must take their stories seriously”. What followed the headline was a candid, honest and brave account of her own experience, together with a plea for readers to recognise that behind stories of rape and sexual harassment, there are people who have to carry on with their lives and come to terms with what has happened, no matter how violent or “ordinary” their experience.

“Rape can happen to anyone at any time and I hoped that my story would demonstrate that,” she explains. “I also wanted to shed some light on why it is so hard to report an incident, and finally, I want to educate and initiate. Rape is not just confined to shady, impoverished corners of the globe; and it has to stop.”

It would have been far easier to write it anonymously, she admits. “Speaking out about rape has its consequences, not just for the person themselves, but for their family and friends. But there are too many faceless victims. I wanted to put a face to a story that has happened to so many people. I’m not disparaging anonymity in any way, but it does depersonalise the issue and I think that, as a result, people often don’t realise that rape is so common.”

Almost instantly, the article went viral, having had more than 28,000 views so far. Francesca has also been inundated with private letters and comments online, mostly from women who tell similar stories.

“It has been chilling to see the same story told again and again, and they all say the same thing – that they were full of self-doubt and fear of being labelled as an attention-seeker or that they wouldn’t be believed. Many, like me, don’t see themselves as a victim or the incident as defining them, but it has nonetheless affected them hugely.”

The responses also revealed just how frightened people are of reporting it. “Many of the women explained how they couldn’t face the trauma of the very system that is meant to protect us.”

Others wondered if it would even get to court – and with just 6 per cent of cases reported to police ultimately ending in a conviction, according to Rape Crisis, who can blame them?

“For reasons I can’t express even to myself, I have no current plans to report my case,” Francesca says. “But actually for me, what has been most empowering is to have gone public, to have helped raise awareness of both how ‘normal’ this is and how harmful it is.”

On reflection, Francesca’s original fear of attention-seeking has a certain irony: “I am certainly seeking attention now. That night, I was forced to share a level of intimacy which I usually reserve for the people I trust and care for. I was violated against my will, by a friend who unfortunately remains on the periphery of my life.

“Rape is incredibly complex and can have devastating consequences, whatever the situation. Right now, there is a critical and pressing need for us to broaden our understanding of the issues and educate future generations on the nature of consent.”

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