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a1000shadesofhurt

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Tag Archives: diagnosis

Prosopagnosia

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Posted by a1000shadesofhurt in prosopagnosia, Uncategorized

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'face blindness', clues, context, diagnosis, faces, facial recognition, fragments, identify, interaction, neurological condition, stranger

It was said:

My face blindness is embarrassing – but it tells me a lot about other people

I grew up thinking I just didn’t fit it. Now, I immediately tell people I can’t recognise faces – and their response is a good measure of kindness versus ego.

Sunday morning. I walk down to the beach with the dog straining at her lead. I’m already on high alert. It’s the moment in the week when people are most likely to be wandering along the seafront, feeling chatty. I’m mentally priming myself, sorting through the categories I might encounter: parents from the schoolyard (hopefully with their children), people I’ve worked with (increasingly hopeless), neighbours from the surrounding streets (no chance). I should have gone to the woods today. It’s too risky.

I cross the road and hear, “Katherine! Hello!” I wonder if I can get away with pretending I didn’t notice. I’m wearing earbuds, which is usually a good precaution, but this woman is determined. She crosses the road diagonally, waving. “How the hell are you?” she says. Straight hair, mousy blonde. No glasses, no tattoos. Jeans, a grey sweatshirt. For God’s sake, why are these people so studiedly ordinary? I fidget with my phone, trying to buy time. Her face is plain. I don’t mean plain as in “ugly”. I mean plain as in vanilla: bland, unremarkable. There’s nothing here that I might have stored in words. Her nose is straight. Her eyes are blue. Her teeth are orderly. And she knows me.

“Hi!” I say, as warmly as possible. “How are you?” This can sometimes elicit clues. Not today. One of the many side-effects of being face-blind is that you become uncomfortably aware of the ordinariness of most interactions. We have stopped in the street to say absolutely nothing to each other. And only one of us knows the context.

The dog lunges to her feet and pulls in the direction of the sea. “Looks like she’s desperate to get going!” I say, laughing, “So sorry! Lovely to see you!” And I’m off at a gallop before this woman, whoever the hell she is, can think about joining me.

I didn’t always know I was face-blind. I grew up thinking that I just didn’t remember people. This, as a friend once told me, seemed a lot like arrogance – an aloof lack of interest in others. But that’s not how it felt on the inside.

I was mostly fine in the closed world of primary school, but when I moved up to secondary, I was immediately disoriented. The corridors were full of teachers I couldn’t identify, and pupils I couldn’t tell apart. As we grew older, the girls in my class developed collective crushes on certain boys from the school across the road and I learned to fake my way into those conversations, rhapsodising about faces that were blank to me.

I barely got to know anyone at university. Unless they lived in my building, they were all part of the general blur of boys with floppy hair and girls in ponytails. I couldn’t recognise them individually, so I didn’t learn their names. I put it down to not fitting in. Back home in the holidays, I thought my ex-boyfriend had moved into a house in the next street. I chatted to him quite often, falling into step with him as we both walked towards the town. It took several weeks for me to realise that he was, in fact, a complete stranger.

It’s not just that faces don’t stick in my mind; they also shift beneath my gaze while people are standing in front of me, and I seem to only be able to perceive them in fragments that won’t piece together as a whole. I routinely struggle to identify those closest to me. The afternoon after my husband had his long hair cut short, I managed to stand next to him asking friends, “Has anyone seen H?” In the three years we lived apart while I was at university, I never could bring his face to mind.

I couldn’t pick out my own son from all the other little blond boys at nursery, and still now in the playground I often have to ask other parents if they can spot him. If I know them well, I can explain. If I don’t, I have an armoury of excuses. He moves too fast! He’s jettisoned his coat! He must have been hiding!

It is a shameful thing for a mother not to recognise her son, but then again I could sniff him out blindfolded in a crowd. I would know his voice anywhere, the way he walks, the perpetual motion of his face. This is how I remember people. I can do a lot of work with the flow of an upper lip as someone talks, with a gait, with the timbre of a voice. I can store certain people in words. There was a man at my last workplace whose moustache grew outwards like a rosette. It fascinated me anew every time I saw it, and I always recognised him, while routinely blanking the members of my team.

At least I knew what it was by then. I only learned the term in my mid-30s, when I read a tweet by Philippa Perry explaining her own face-blindness, and the embarrassment when she’s unable to identify seeming strangers at events. It was a heart-stopping moment for me; a spark of grateful recognition. “Is that an actual thing?” I replied. “An actual condition? I’m not just a terrible person?”

Now, when I mention it online, somebody usually pops up to tell me it’s actually called prosopagnosia, as if that makes any difference. The opaque scientific name does nothing to assist me, so I routinely forget the word like I’d forget a face. Research is in its infancy, but we know that face recognition is dependent on a network of brain regions across the right and left hemispheres. There is so much that can disrupt these connections, and so it’s likely that there are multiple ways of being face-blind.

I used to compare notes with my former colleague Carolyn Oulton, a professor of English literature whose ability to recognise people seems even more limited than mine. Carolyn sought a formal diagnosis in the hope of making her working life easier, but discovered that her disorientation extended to places and shapes, too. “I now know I can’t call it prosopagnosia because it’s broader than that,” she tells me. “I’m left saying ‘I’m bad with faces,’ which is exactly where I started.”

I’ve never bothered with a diagnosis. I’m not sure what it could do for me. There’s no treatment and certainly no cure. Even if there were, I’m not sure I’d take it. Strange as it seems, my face-blindness feels innate to me. Carolyn agrees: “I don’t know if I enjoy being face-blind, I just know that I’ve created a way of understanding it as part of the way I navigate life,” she says. “To change that would be like suddenly having a different name.”

However, another face-blind friend, who prefers to remain anonymous, would love to find a cure. “I’m an extrovert. I need people,” she says. “Face-blindness is a terrible blight on that. I’ve offended too many people by walking past them in the street, and I’ve spent too many parties thinking I don’t know anyone when I know plenty of people. I feel quite vulnerable around it.”

Perhaps that’s an insight into why I’m more accepting of my own face-blindness – it’s the perfect complement to my introversion; to my sense that I don’t really want to socialise anyway. The two conspire together – it’s the perfect pairing. I’m best off avoiding busy rooms, because they exhaust me, and my prosopagnosia relieves me of having to process all those different personalities.

I increasingly use my face-blindness as a sorting device. I tell people about it on our first meeting, and the way they behave after that reveals a lot. Some are touchingly helpful – one friend always finds a way to shoe-horn her name into the first sentence while I orient myself – but I’m surprised at the number of people who don’t think I’ll be blind to their face, uniquely. They seamlessly translate my face-blindness into a failure to love them enough, rather than a neurological difference. Disclosing it has become a reliable measure of people’s kindness, their neediness, their ability to put their ego aside.

But there are other things that leave me attached to it. Faces that I’m told are beautiful, the models and actors with compact features and perfect symmetry, all look exactly the same to me. They are frictionless, offering nothing on which I can anchor my gaze, and my eyes slide off them. I don’t understand why they are so lovable to everyone else. To me, they seem hard and resistant.

The faces I fall in love with are distinctive. They have broken noses and wrinkles, crooked teeth and diagonal smiles. They are individual. They signal wisdom, a life lived. I can’t help but be grateful for these faces. More than that, I recognise my loved ones just as intensely as a person who could bring their faces easily to mind. My sense of connection is multi-faceted, engaging all my senses, and it’s full of wonder, because each time I look at them, I am seeing something new. I know them no less deeply. I just find my home in a different way.

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.

What they don’t tell you about dementia

30 Friday Jan 2015

Posted by a1000shadesofhurt in Uncategorized

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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.

If psychosis is a rational response to abuse, let’s talk about it

03 Wednesday Dec 2014

Posted by a1000shadesofhurt in Uncategorized

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abuse, cbt, culture, diagnosis, hearing voices, medication, paranoia, psychological support, psychosis, schizophrenia, trauma

If psychosis is a rational response to abuse, let’s talk about it

There is something of a sea change in the way we understand experiences that have traditionally been labelled as psychotic. In our culture at least, experiences such as hearing voices or seeing visions have long been viewed by the medical establishment as unequivocal symptoms of mental illness. Treatment has tended to focus on the suppression of such “symptoms” using antipsychotic medication.

Research (often funded by drugs companies) has been largely concerned with the brain as a physical organ, rather than with the person within whose head it is housed, or indeed with their life experience. And, because of the presumption that psychotic symptoms are the preserve of mentally ill people, estimates of the numbers affected have been based on the numbers who have received a particular diagnosis.

But a report published last week by the British Psychological Society’s division of clinical psychology, challenges many of these assumptions.Understanding Psychosis and Schizophrenia presents a compelling case for trying to understand psychotic experiences as opposed to merely categorising them. It argues that such experiences can be understood from a psychological perspective, in the same way as other thoughts and feelings, rather than being placed on the other side of an artificial sick/healthy divide.

And, indeed, they appear to be much more common than is frequently supposed. According to the report, up to 10% of the population has heard a voice speaking when nobody was there and almost one in three holds beliefs that might be considered paranoid. Two in three people who had heard voices or seen visions did not seek help because they were untroubled by them. And, of course, there is huge diversity in the way such experiences are understood and valued in different cultures.

For those who find their experiences unwelcome and disturbing (and they can be extremely disturbing; I don’t think anyone questions that) the range of help on offer is decidedly limited. Despite the National Institute for Health and Care Excellence recommending that everyone with a diagnosis of schizophrenia is offered cognitive behaviour therapy(CBT), only one in 10 has access to it. Treatment by medication alone, forcibly if needed, is the norm.

It is widely accepted that early life experience, trauma, abuse and deprivation greatly increase the risk of developing psychosis. Indeed,research suggests that experiencing multiple childhood traumas gives approximately the same risk of developing psychosis as smoking does for developing lung cancer.

Many people object to the psychotic label because they consider their experiences a natural reaction to the abuse they have suffered, and even a vital survival tool. What they want above all is space and time to talk about their experiences and to make sense of them. It is shocking how few are given this opportunity.

Of course, psychological approaches to helping those with psychosis will not suit everyone. There are those for whom a diagnosis can come as a welcome relief. Many people find medication helpful, as treatment on its own or alongside talking therapies.

In fact, one of the most persuasive messages of the report is that people should be allowed to understand their experience in their own way, without professionals insisting on a particular interpretation.

It is a highly collaborative approach and fitting that at least a quarter of those who contributed to the report have lived experience of psychosis. Their opinions and experiences are as varied as you would expect with any group of individuals but together they comprise an enormously powerful and vivid testimony to the full range of human experience and to the many and varied ways in which we can help each other to make sense of it.

Schizophrenia: the most misunderstood mental illness?

16 Wednesday Jul 2014

Posted by a1000shadesofhurt in Uncategorized

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diagnosis, discrimination, fear, help, media, mental health issues, paranoia, psychosis, recovery, schizophrenia, shame, silence, stereotypes, stigma

Schizophrenia: the most misunderstood mental illness?

Let’s face it, when most people think about schizophrenia, those thoughts don’t tend to be overly positive. That’s not just a hunch. When my charity, Rethink Mental Illness, Googled the phrase ‘schizophrenics should…’ when researching a potential campaign, we were so distressed by the results, we decided to drop the idea completely. I won’t go into details, but what we found confirmed our worst suspicions.

Schizophrenia affects over 220,000 people in England and is possibly the most stigmatised and misunderstood of all mental illnesses. While mental health stigma is decreasing overall, thanks in large part to the Time to Change anti stigma campaign which we run with Mind, people with schizophrenia are still feared and demonised.

Over 60 per cent of people with mental health problems say the stigma and discrimination they face is so bad, that it’s worse than the symptoms of the illness itself. Stigma ruins lives. It means people end up suffering alone, afraid to tell friends, family and colleagues about what they’re going through. This silence encourages feelings of shame and can ultimately deter people from getting help.

Someone who knows first hand how damaging this stigma can be is 33 year-old Erica Camus*, who was sacked from her job as a university lecturer, after her bosses found out about her schizophrenia diagnosis, which she’d kept hidden from them.

Erica was completely stunned. “It was an awful feeling. The dean said that if I’d been open about my illness at the start, I’d have still got the job. But I don’t believe him. To me, it was blatant discrimination.”

She says that since then, she’s become even more cautious about being open. “I’ve discussed it with lots of people who’re in a similar position, but I still don’t know what the best way is. My strategy now is to avoid telling people unless it’s comes up, although it can be very hard to keep under wraps.”

Dr Joseph Hayes, Clinical fellow in Psychiatry at UCL says negative perceptions of schizophrenia can have a direct impact on patients. “Some people definitely do internalise the shame associated with it. For someone already suffering from paranoia, to feel that people around you perceive you as strange or dangerous can compound things.

“I think part of the problem is that most people who have never experienced psychosis, find it hard to imagine what it’s like. Most of us can relate to depression and anxiety, but a lot of us struggle to empathise with people affected by schizophrenia.”

Another problem is that when schizophrenia is mentioned in the media or portrayed on screen, it’s almost always linked to violence. We see press headlines about ‘schizo’ murderers and fictional characters in film or on TV are often no better. Too often, characters with mental illness are the sinister baddies waiting in the shadows, they’re the ones you’re supposed to be frightened of, not empathise with. This is particularly worrying in light of research by Time to Change, which found that people develop their understanding of mental illness from films, more than any other type of media.

These skewed representations of mental illness have created a false association between schizophrenia and violence in the public imagination. In reality, violence is not a symptom of the illness and those affected are much more likely to be the victim of a crime than the perpetrator.

We never hear from the silent majority, who are quietly getting on with their lives and pose no threat to anyone. We also never hear about people who are able to manage their symptoms and live normal and happy lives.

That’s why working on the Finding Mike campaign, in which mental health campaigner Jonny Benjamin set up a nationwide search to find the stranger who talked him out of taking his own life on Waterloo bridge, was such an incredible experience. Jonny, who has schizophrenia, wanted to thank the man who had saved him and tell him how much his life had changed for the better since that day.

The search captured the public imagination in a way we never could have predicted. Soon #Findmike was trending all over the world and Jonny was making headlines. For me, the best thing about it was seeing a media story about someone with schizophrenia that wasn’t linked to violence and contained a message of hope and recovery. Jonny is living proof that things can get better, no matter how bleak they may seem. This is all too rare.

As the campaign grew bigger by the day, I accompanied Jonny on an endless trail of media interviews. What I found most fascinating about this process was how so many of the journalists and presenters we met, were visibly shocked that this young, handsome, articulate and all-round lovely man in front of them, could possibly have schizophrenia.

Several told Jonny that he ‘didn’t look like a schizophrenic’. One admitted that his mental image of someone with schizophrenia was ‘a man running about with an axe’. It was especially worrying to hear this from journalists, the very people who help shape public understanding of mental illness.

Many of the journalists also suggested that through the campaign, Jonny has become a kind of ‘poster boy’ for schizophrenia and in a way, I think he has.

Jonny has mixed feelings about the label. “I hope that by going public with my story, I’ve got the message out there that it is possible to live with schizophrenia and manage it. It’s not easy, it’s an ongoing battle, but it is possible. But I’m aware that I’m one of the lucky ones. I’ve been given access to the tools I need like CBT, but that’s not most people’s experience. Because of our underfunded mental health system, most people don’t get that kind of support. I can’t possibly represent everyone affected, but I hope I’ve challenged some stereotypes.”

As Jonny rightly says, one person cannot possibly represent such a diverse group of people. Schizophrenia is a very broad diagnosis and each individual experience of the illness is unique. Some people will have one or two episodes and go on make a full recovery, while others will live with the illness for the rest of their lives. Some people are able to work and be independent and others will need a lot of support. Some people reject the diagnosis altogether.

What we really need is a much more varied and nuanced depiction of mental illness in the media that reflects the true diversity of people’s experiences.

What I hope Jonny has managed to do is start a new conversation about schizophrenia. I hope he has made people think twice about their preconceptions of ‘schizophrenics’. And most importantly, I hope he has helped pave the way for many more ‘poster boys’ and girls to have their voices heard too.

For more information, visit Rethink Mental Illness

*Name has been changed

 

A third of first-time mothers suffer depressive symptoms, research finds

07 Saturday Jun 2014

Posted by a1000shadesofhurt in Postnatal Depression

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baby, Children, Depression, depressive symptoms, diagnosis, early years, first-time mothers, four years postpartum, GPs, health professionals, health visitors, irritable, low mood, maternal health, mental health issues, midwives, mothers, new mothers, parents, Postnatal Depression, postpartum, pregnancy, risk, signs, tearful, training, worrying

A third of first-time mothers suffer depressive symptoms, research finds

One in three first-time mothers suffers symptoms of depression linked to their baby’s birth while pregnant and/or during the first four years of the child’s life, according to research.

And more women are depressed when their child turns four than at any time before that, according to the study, which challenges the notion that mothers’ birth-related mental struggles usually happen at or after the baby’s arrival.

The findings have led to calls for all women giving birth in the UK to have their mental health monitored until their child turns five to ensure that more of those experiencing difficulties are identified.

The results are based on research in Australia, but experts believe that about the same number of women in the UK experience bouts of mental ill-health associated with becoming a mother.

In all 1,507 women from six hospitals in Melbourne, Australia, told researchers from the Murdoch children’s research institute and royal children’s hospital in Parkville, Victoria, about their experience of episodes of poor mental health at regular intervals until their child turned four.

The authors found that almost one in three first-time mothers reported “depressive symptoms on at least one occasion from early pregnancy to four years postpartum [and that] the prevalence of depressive symptoms was highest at four years postpartum”. The women’s depressive symptoms are often short-lived episodes and do not mean that the women were diagnosed with postnatal depression. Studies in both the UK and internationally have estimated that between 10% and 15% of new mothers suffer from that clinical condition.

The researchers also found that four years after the child’s birth 14.5% display depressive symptoms, of whom 40% had not previously reported feeling very low. At that time, women with only one child were much more likely (22.9%) than those with two or more offspring (11.3%) to be depressed.

Dr Jim Bolton, a member of the Royal College of Psychiatrists and a consultant psychiatrist at a London hospital, said that one in three women giving birth in the UK were likely to become depressed at some point during those first four years. “If a similar study was done here, I wouldn’t be surprised if the results were similar. Usually the sorts of mothers who are at greater risk of depression are younger mothers who feel they can’t cope and mothers living in situations of adversity or deprivation or partner violence,” he said.

“These findings are about depressive symptoms, which can be very short-lived, not a formal diagnosis of illness or postnatal depression. This study isn’t saying that one in three women gets that,” stressed Bolton, who treats mental health problems in pregnancy and after birth among new mothers in his hospital’s women’s health unit.

The authors recommend that the UK overhauls its monitoring of maternal mental health, which focuses on pregnancy and the early years after birth, because more than half the women who experience depression after becoming a parent are not identified by GPs, midwives or health visitors.

More women could have postnatal depression than the usual estimate of 10%-15% partly because women may mistake the signs of it – which include being more irritable than usual or unusually tearful, inability to enjoy being a parent or worrying unduly about the baby’s health – as being things undergone by all new mothers.

Health professionals do not always spot it or ask the right questions to identify it, though are far more aware of it than ever, Bolton added.

One leading psychiatrist said that the one in three women who had depressive symptoms was between two and five times higher than the estimated number of people in the general population who would experience serious low mood in their lifetime, but was higher than the number of women who experienced the most severe forms of depression. Between 5%-10% of people generally suffer major/serious depression during their lifetime.The study, published in BJOG: An international journal of obstetrics and gynaecology, is the first to follow a sizeable number of new mothers for as long as four years after birth. Elizabeth Duff, senior policy adviser at the parenting charity the NCT, said: “This study has included mothers for four years after birth, so suggests that perinatal mental health needs to be monitored for a longer period. Given the devastating effects of postnatal depression, health professionals should give equal consideration to the mental and physical health of parents with young children.”

A Department of Health spokeswoman said it welcomed any new research that would lead to women receiving better help with maternal depression.

“We want to do everything we can to make sure women and families get as much support as possible throughout pregnancy and beyond. That’s why, earlier this month, we announced that expert training in mental health will be rolled out for doctors and midwives to identify and help women who are at risk of depression or other mental health issues,” she said.

Numbers of midwives and health visitors have been growing under the coalition, while specialist mental health doctors and midwives will help improve earlier diagnosis of such problems, she added. However, the Royal College of Midwives said that even more midwives were needed to ensure mothers received the best possible care of their psychological welfare.

A group of neuroscientists believes it can communicate with “locked-in” coma patients

21 Monday Apr 2014

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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'vegetative state'; 'trapped'; coma, awakefulness, awareness, Brain activity, brain imaging, brain injury, brain scans, cognitive processing, communication, conscious, diagnosis, families, fMRI, Locked-In Syndrome, misdiagnosis, powerlessness, recovery, reflex, relatives

A group of neuroscientists believes it can communicate with “locked-in” coma patients

“Imagine you wake up, locked inside a box,” says Adrian Owen.”It’s a perfect fit, down to every last one of your fingers and toes. It’s a strange box because you can listen to absolutely everything going on around you, yet your voice cannot be heard. In fact, the box fits so tightly around your face and lips that you can’t speak, or make a noise. At first, this feels like a game. Then reality sets in. You see and hear your family lamenting your fate. You’re too cold. Then too hot. You’re always thirsty. The visits of your friends and family dwindle. Your partner moves on. And there’s nothing you can do about it.”

Owen and I are talking on Skype. I’m sitting in London while he’s at the University of Western Ontario in Canada. Owen’s reddish hair and close-cropped beard loom large on my screen as he becomes animated describing the torment of those with no voice: his patients.

People in a “vegetative state” are awake yet unaware. Their eyes can open and sometimes wander. They can smile, grasp another’s hand, cry, groan or grunt. But they are indifferent to a hand clap, unable to see or understand speech. Their motions are not purposeful but reflexive. Their minds remain firmly shut. Still, when their eyelids flutter open, you are always left wondering if there’s a glimmer of consciousness.

A decade ago, the answer would have been a bleak and emphatic no. Not any longer. Using brain scanners, Owen has found that some may be trapped inside their bodies yet able to think and feel to varying extents. The number of these cases has soared in recent decades, ironically, because doctors have steadily become better at saving patients with catastrophic injuries.

Today, trapped, damaged and diminished minds inhabit clinics and nursing homes worldwide – in Europe alone, the number of new coma cases is estimated to be 230,000 annually, of whom 30,000 will languish in a persistent vegetative state. They are some of the most tragic and expensive artefacts of modern intensive care.

Owen knows this only too well. In 1997, a close friend set off on her usual cycle to work. Anne had a weak spot on a blood vessel in her head, known as a brain aneurysm. Five minutes into her trip, the aneurysm burst and she crashed into a tree. She never regained consciousness.

The tragedy of Anne’s accident would shape Owen’s life. He began to wonder if there was a way to determine which of these patients were in an unconscious coma, which were conscious and which were somewhere in between?

That year, he had moved to the Medical Research Council’s Cognition and Brain Sciences Unit in Cambridge, where researchers used various scanning techniques. One, positron emission tomography (PET), highlights different metabolic processes in the brain, such as oxygen and sugar use. Another, known as functional magnetic resonance imaging (fMRI), can reveal active centres in the brain by detecting the tiny surges in blood flow that take place as a mind whirrs. Owen wondered whether he could use these technologies to reach out to patients, like his friend, stuck between sensibility and oblivion.

Today, being alive is no longer linked to having a beating heart, explains Owen. If you are on a life-support machine, are you dead? Is a failure to sustain independent life a reasonable definition of death? No, otherwise we would all be “dead” in the nine months before birth.

The issue becomes murkier when we consider those trapped in the twilight worlds between normal life and death – from those who slip in and out of awareness, who are trapped in a “minimally conscious state”, to those who are severely impaired in a vegetative state or a coma.

In the wake of the development of the artificial respirator during the 1950s in Denmark, pioneering work to categorise disorders of consciousness was carried out in the 1960s by the neurologist Fred Plum in New York and the neurosurgeon Bryan Jennett in Glasgow.

Plum coined the term “locked-in syndrome”, in which a patient is aware and awake but cannot move or talk. With Plum, Jennett devised the Glasgow Coma Scale to rate the depth of coma, and Jennett followed up with the Glasgow Outcome Scale to weigh up the extent of recovery, from death to mild disability. Together they adopted the term “persistent vegetative state” for patients who, they wrote, “have periods of wakefulness when their eyes are open and move; their responsiveness is limited to primitive postural and reflex movements of the limbs, and they never speak”. In 2002, Jennett was among a group of neurologists who chose the phrase “minimally conscious” to describe those who are sometimes awake and partly aware, who show erratic signs of consciousness so that at one time they might be able to follow a simple instruction and at another they might not.

Kate Bainbridge, a 26-year-old schoolteacher, lapsed into a coma three days after she came down with a flu-like illness. A few weeks after her infection had cleared, Kate awoke from the coma but was diagnosed as being in a vegetative state. Luckily, the intensive-care doctor responsible for her, David Menon, was also a principal investigator at the newly opened Wolfson Brain Imaging Centre in Cambridge, where Adrian Owen then worked.

Menon wondered whether elements of cognitive processing might be retained in patients in a vegetative state, and discussed with Owen how to use a brain scanner to detect them. In 1997, four months after she had been diagnosed as vegetative, Kate became the first patient in such a state to be studied by the Cambridge group. The results, published in 1998, were extraordinary. Her brain responses were indistinguishable from those of healthy volunteers; her scans revealed brain activity at the back of her brain, in a part which helps recognise faces. Kate became the first such patient in whom sophisticated brain imaging (in this case PET) revealed “covert cognition”. Of course, whether that response was a reflex or a signal of consciousness was, at the time, a matter of debate.

The results were of huge significance not only for science but also for Kate and her parents. “The existence of preserved cognitive processing removed the nihilism that pervaded the management of such patients in general, and supported a decision to continue to treat Kate aggressively,” recalls Menon.

Kate eventually surfaced from her ordeal, six months after the initial diagnosis. She described how she was indeed sometimes aware of herself and her surroundings. “They said I could not feel pain,” she says. “They were so wrong.”

Sometimes she’d cry out, but nurses thought it was nothing more than a reflex. Hospital staff had no idea how much she suffered in their care. Physiotherapy nurses never explained what they were doing to her. She was terrified when they removed mucus from her lungs. “I can’t tell you how frightening it was, especially suction through the mouth,” she has written. Her pain and despair became such that she tried to snuff out her life by holding her breath. “I could not stop my nose from breathing, so it did not work. My body did not seem to want to die.”

Kate says her recovery was not so much like turning on a light but a gradual awakening. By then she had lost her job, her sense of smell and taste, and much of what might have been a normal future. Now back with her parents, Kate is still very disabled and needs a wheelchair. Yet, 12 years after her illness, she started to talk again and, though still angry about the way she was treated when she was at her most vulnerable, she remains grateful to those who helped her mind to escape.

She sent Owen a note:

“Dear Adrian, please use my case to show people how important the scans are. I want more people to know about them. I am a big fan of them now. I was unresponsive and looked hopeless, but the scan showed people I was in there. It was like magic, it found me.” k

Nicholas Schiff is a neurologist at Weill Cornell Medical College in New York. His working life is a balancing act between putting the interests of his patients and their families first and keeping true to the science as he wrestles with disorders of consciousness. “There’s a lot we don’t know,” he admits. “Frankly, I am wrong a lot of the time.”

In 2005, Schiff applied his emerging understanding of the circuits of consciousness to Jim, a 38-year-old man who had been beaten and robbed and was left minimally conscious. Jim’s eyes had mostly remained shut. He was unable to speak and could communicate only by a nod, or tiny eye or finger movements. His plight seemed hopeless. Eventually, Jim’s mother gave a “do not resuscitate order” to doctors. Schiff thought differently.

Schiff had earlier scanned Jim with fMRI in 2001. His team had played subjects, including Jim, an audiotape in which a relative or loved one reminisced. In detailed fMRI scans, Jim had shown that, despite having a very underactive brain, he had preserved large-scale language networks. When he heard a story that meant something to him, his brain lit up. What, thought Schiff, if Jim’s thalamus could be activated by deep brain stimulation?

A brain pacemaker was implanted into Jim. After its two electrodes delivered pulses of electricity to his thalamus, he was able to use words and gestures, respond reliably to requests, eat normally, drink from a cup, and carry out simple tasks such as brushing his hair. Schiff believes that once a brain re-engages with the world, it accelerates processes of repair. For the next six years, before Jim died of unrelated causes, he kept his mind above the minimally conscious state. “He could converse in short sentences reliably and consistently and make his wishes known,” says Schiff. “He could chew and swallow and eat ice-cream and hang out. His family told us that they had him back.” The case made the front page of the New York Times. “I prayed for a miracle,” his mother told me at the time he was brought back. “The most important part is that he can say ‘Mummy and Pop, I love you.’ God bless those wonderful doctors. I still cry every time I see my son, but it is tears of joy.”

In a forested campus south of Liège, Steven Laureys studies vegetative patients in research that dates back decades. Working there as part of the Cyclotron Research Centre in the 1990s, he was surprised when PET brain scans revealed that the patients could respond to a mention of their own name. Meanwhile, on the other side of the Atlantic, Nicholas Schiff was finding that partially working regions lay within catastrophically injured brains. What did it all mean?

At that time, doctors thought they already knew the answers: no patient in a persistent vegetative state was conscious. Medical practitioners, with the best intentions, thought it was perfectly acceptable to end the life of a vegetative patient by starvation and the withdrawal of water. This was the age of what Laureys calls “therapeutic nihilism”.

What Owen, Laureys and Schiff were proposing was a rethink of some of the patients who were considered vegetative. A few of them could even be classed as being fully conscious and locked-in. The establishment was doggedly opposed. “The hostility we encountered [in the late 1990s] went well beyond simple scepticism,” says Schiff. Looking back, Laureys pauses and smiles thinly: “Medical doctors do not like to be told they are wrong.”

Then came 2006. Owen and Laureys were trying to find a reliable way to communicate with patients in a vegetative state, including Gillian. In July 2005, this 23-year-old had been crossing a road, chatting on her mobile phone. She was struck by two cars and diagnosed as vegetative.

Five months later, a strange piece of serendipity allowed Gillian to unlock her box. “I just had a hunch,” says Owen. “I asked a healthy control [subject] to imagine playing tennis. Then I asked her to imagine walking through the rooms of her house.” Imagining tennis activates part of the cortex called the supplementary motor area, involved in the mental simulation of movements. But imagining walking around the house activates the parahippocampal gyrus in the core of the brain, the posterior parietal lobe, and the lateral premotor cortex. So, if people were asked to imagine tennis for “yes” and walking around the house for “no”, they could answer questions via fMRI.

Gazing into Gillian’s “vegetative” brain with the brain scanner, he asked her to imagine the same things – and saw strikingly similar activation patterns to the healthy volunteers. It was an electric moment. Owen could read her mind.

Gillian’s case, published in the journal Science in 2006, made front-page headlines around the world. The result provoked wonder and, of course, disbelief. “Broadly speaking, I received two types of email from my peers,” says Owen. “‘This is amazing – well done!’ and ‘How could you possibly say this woman is conscious?'”

As the old saw goes, extraordinary claims require extraordinary evidence. The sceptics suggested that it was wrong to make these “radical inferences” when there could be a more straightforward interpretation. Daniel Greenberg, a psychologist at the University of California, Los Angeles, suggested that, “the brain activity was unconsciously triggered by the last word of the instructions, which always referred to the item to be imagined”.

Parashkev Nachev, a neurologist now at University College London, says he objected to Owen’s 2006 paper not on grounds of implausibility or a flawed statistical analysis but because of “errors of inference”. Although a conscious brain, when imagining tennis, triggers a certain pattern of activation, it does not necessarily mean the same pattern of activation signifies consciousness. The same brain area can be activated in many circumstances, Nachev says, with or without any conscious correlate. Moreover, he argues that Gillian was not offered a true choice to think about playing tennis. Just as a lack of response could be because of an inability to respond or a decision not to co- operate, a direct response to a simple instruction could be a conscious decision or a reflex.

What is needed is less philosophising and more data, says Owen. A follow-up study published in 2010 by Owen, Laureys and colleagues tested 54 patients with a clinical diagnosis of being in a vegetative state or a minimally conscious state; five responded in the same way as Gillian. Four were supposedly in a vegetative state at admission.

Owen, Schiff and Laureys have explored alternative explanations of what they observed and, for example, acknowledge that the brain areas they study when they interrogate patients can be activated in other ways. But the 2010 paper ruled out such automatic behaviours as an explanation, they say: the activations persist too long to signify anything other than intent. “You cannot communicate unconsciously – it is just not possible,” says Owen. “We have won that argument”.

Since Owen’s 2006 Science paper, studies in Belgium, the UK, the US and Canada suggest that a significant proportion of patients who were classified as vegetative in recent years have been misdiagnosed – Owen estimates perhaps as many as 20 per cent. Schiff, who weighs up the extent of misdiagnosis a different way, goes further. Based on recent studies, he says around 40 per cent of patients thought to be vegetative are, when examined more closely, partly aware. Among this group of supposedly vegetative patients are those who are revealed by scanners to be able to communicate and should be diagnosed as locked-in, if they are fully conscious, or minimally conscious, if their abilities wax and wane.

There is anecdotal evidence that when contact is re-established with the occupant of a living box they are understandably morose, even suicidal. They have been ground down by frustration at their powerlessness, over the months, even years, it can take to recognise their plight. Yet the human spirit is resilient, so much so that they can become accustomed to life in this twilight state. In a survey of patients with locked-in syndrome, Laureys has found that when a line of communication is set up, the majority become acclimatised to their situation, even content (again, these insights took time to be accepted by the medical and scientific establishment – and even to be published in a scientific journal – reflecting the prevailing unease about the implications for hospitals and care homes).

The important question is detecting the extent to which such patients are conscious. Studies of large numbers of patients with brain injuries, and how they fare over the years, show that it makes a huge difference to the chance of recovery if a patient is minimally conscious rather than vegetative. The former have fragmentary understanding and awareness and may recover enough to return to work within a year or two.

Yet there are still surprises, such as the case of New York fireman Don Herbert, who awoke after a decade from a minimally conscious state caused by a severe brain injury suffered while fighting a fire in 1995. Schiff has used a technique called diffusion tensor imaging to show how a brain can rewire itself even decades after an injury – yet in the past year, even he has recommended withdrawing care from a man who had lain in a coma for eight weeks after a cardiac arrest. “I was wrong,” he says. “This man is now back at work.”

Parashkev Nachev has not changed his view since he first criticised Owen’s work, and spelt out the basis of his unease in a more detailed paper published in 2010. “For every relative of a living PVS [persistent vegetative state] patient given (probably false) hope, another is burdened with the guilt of having acquiesced in the withdrawal of treatment from someone who – he has been led to believe – may have been more alive than it seemed,” he says. “There are moral costs to false positives as well as to false negatives.

“I find the whole media circus surrounding the issue rather distasteful. The relatives of these patients are distressed enough as it is.”

Laureys, Owen and Schiff spend a great deal of time with the families and understand these sensitivities only too well. Owen counters that, from his years of experience dealing with the families, they are grateful that doctors and scientists take an interest and are doing everything they can. “These patients have been short-changed over the years,” he insists.

Owen is adamant that doctors have a moral duty to provide a correct diagnosis, even if the results cause guilt, unease or distress. “We must give every patient the best chance of an accurate diagnosis, so we can give them the appropriate care that goes along with that diagnosis.”

Under the umbrella classification of “vegetative” lies a vast array of brain injuries and, as a result, even some of the most vocal critics accept that some vegetative patients are not as diminished as traditional measures suggest. Professor Lynne Turner-Stokes chairs a group for the Royal College of Physicians that is revising UK guidelines on “Prolonged Disorders of Consciousness”. She remains unconvinced that the exceptional cases identified by Owen, Laureys and Schiff are particularly common or that enough has been done to establish brain scanners as a standard tool for routine diagnosis, particularly when the cost and convenience of these methods are taken into account. When it comes to extending these tests to all patients in a vegetative states as standard practice, “The evidence is just not there yet,” she says.

But she stresses that she is simply being cautious, not sceptical, describing the work of Owen, Laureys and Schiff as “important and exciting”. “We are only just beginning to scratch the surface,” she says. “But I have no doubt [these techniques] will have a place, eventually, in the evaluation of patients.”

Back on Skype, Owen smiles, considering whether to tell me what he is planning next. His partner, Jessica Grahn, also a neuroscientist, became pregnant at the start of 2013. What happens when consciousness winks on in the developing brain? He emails me a video of their unborn child, a montage of fMRI slices through their baby’s head, as it twists and turns in Jessica’s womb. “My colleagues have been doing fMRI on my wife’s tummy every week for a few weeks now to see if we can activate the foetus’s brain,” he writes. “It is amazing.”

Some names have been changed to protect identities. Adrian Owen’s friend Anne remains in a vegetative state. Adrian Owen and Jessica Grahn’s baby boy was born on 9 October 2013.

Cancer’s lost generation: the teens and young adults ‘forgotten in the middle’

16 Monday Dec 2013

Posted by a1000shadesofhurt in Cancer, Young People

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diagnosis, misdiagnosis, teenagers, Young adults, young people

Cancer’s lost generation: the teens and young adults ‘forgotten in the middle’

After six months of misdiagnosis, Stephen was eventually told he had bowel cancer. He was 15. A straight-A student, he had always wanted to be a doctor. Now 18, he says: “I’ve lost faith in the healthcare system.” He visited his GP numerous times with “crippling symptoms” and went to A&E on five occasions. “I have a strong family history ofbowel cancer. At one point, we asked the doctor if I might have cancer and demanded further scans. He said: ‘No, definitely not, you’re too young.'”

Over the past three decades, cancer survival rates have increased dramatically. But for teenagers and those in their 20s, the outlook is less promising – several reports have shown that improvements in outcomes for them do not match those among children and older adults.

To investigate this, the National Institute for Health Research has launched Brightlight, a cohort study that hopes to become the largest ever of young cancer patients (aged 13-24). It intends to recruit more than 2,000 people by next April. In earlier studies, two of its leaders, Professor Jeremy Whelan, a specialist in teenage oncology atUniversity College London Hospital, and Dr Lorna Fern of the National Cancer Research Institute, found that one of the critical factors for the “survival deficit” is delayed or mis-diagnosis. Invariably, this leads to a poorer prognosis as the more advanced the cancer is, the harder it is to treat.

According to a study published in the BMJ in October this year, those aged 16 to 25 are twice as likely as older adults to have three or more GP consultations before being referred to a specialist and a 2010 survey found more than a quarter of young cancer patients had visited their GP at least four times, many presenting with multiple “alert”symptoms (lumps, swellings or persistent unexplained pain) before their eventual referral. More than a third of participants at this year’s Teenage Cancer Trust (TCT) conference (the aptly named Find Your Sense of Tumour) were only diagnosed on emergency. Among many young patients there is overwhelming resentment of GPs; a sense that they were not taken seriously, their symptoms dismissed as adolescent fatigue, stress, or persistent hangovers.

It is true that cancer is rare among young people. But it is also the leading medical cause of non-accidental death among them – and the TCT says that in the past 30 years, cancer among teens and young adults has risen by 50%; for the first time, teenage cancer cases outnumber those of children. Young people are also known to contract the most aggressive forms, exacerbated by their growth spurts. Failure to detect the warning signs at an early stage can have devastating consequences, as Stephen’s case shows; his cancer was recently diagnosed as incurable. Raising awareness, he says, is essential to dispel the myth that young people are immune – a situation not helped by NHS campaigns such as Be Clear on Cancer, which feature only older faces.

Greater awareness is also needed to enable GPs to spot the “alarm-bell” symptoms. Since younger patients tend to develop the rarer forms of cancer – leukaemias, lymphomas, sarcomas, germ-cell tumours and cancers of the central nervous system – there is an urgent need for more research to group the specific symptoms of these malignancies.

At the moment, teens and young adults are also seriously under-represented in clinical trials. In a 2008 study, Whelan and Fern found almost half of patients aged 10-14 participated in a trial, but this fell to 25.2% for 15 to 19-year-olds, and just 13.1% for those aged 20-24. For too long, they argue, clinical and research communities have failed to recognise teens and young adults as a distinct category with unique biologies, and they have been left “forgotten in the middle”.

It is the same story when it comes to hospital care; teens and young adults have been identified as a “lost tribe”, caught between paediatric services and those designed for older patients. The National Cancer Reform Strategy (2007) estimated that 70% were not treated in age-appropriate settings; many were left on children’s wards, with the disturbance of crying babies, or isolated in bays with elderly patients and surrounded by constant bereavement.

Those lucky enough to be treated alongside their peers at a young-person unit describe the experience as a godsend. “I was a total mess before I found Teenage Cancer Trust,” says Jasmine Singh, 22, who is recovering from Hodgkin’s lymphoma. She was transferred to a TCT unit with specialist young-person cancer nurses and counsellors, as well as a team of support workers offering education and career advice – a lifeline for young sufferers who fall behind with their studies or training.

In 2005, government directives recommended that all 13 to 24-year-old cancer patients be treated in such units – but at the moment there are only 27 in the UK, and only around half of all young patients are treated in one. The same recommendations stressed the importance of “age-appropriate care”, but there is no real consensus over what this means. The Brightlight study sets out to provide some answers. By interviewing young adults over a five-year period, it aims to gain a clearer insight into the type of care that benefits them the most.

One of the study’s pioneers was Stephen himself, in his capacity as a young adviser at the National Cancer Research Institute. “I don’t know how long I have left because I haven’t asked,” he says. He refuses to waste a moment on self-pity – in between chemotherapy treatments, he is too busy fundraising for TCT, determined to improve the outlook for other young people with cancer.

Are mental illnesses such as PMS and depression culturally determined?

20 Monday May 2013

Posted by a1000shadesofhurt in Uncategorized

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culture-bound syndromes, Depression, diagnosis, DSM, mental health issues, symptoms

Are mental illnesses such as PMS and depression culturally determined?

The latest edition of the Diagnostic and Statistical Manual of Mental Disorders – DSM 5 – was published over the weekend. Produced by the American Psychiatric Association, it describes the symptoms of a vast range of mental illnesses and is intended as a guide to diagnosis.

Why should we in the UK care? Simple: the political dominance of the US means that as soon as a mental disorder is named in the DSM, that disorder becomes valid in the eyes of many.

But not everyone is a fan. The DSM committee has been accused of continually expanding the categories of mental illness, resulting in“diagnostic inflation” – with the result that increasing numbers of us are diagnosed with one condition or another.

The committee has also fallen foul of the US National Institute for Mental Health (NIMH), which dislikes the DSM’s symptom-based approach. The NIMH argues that laboratory tests for biomarkers are the only rational way to diagnose mental illness.

And two weeks ago the British Psychological Society released a statement claiming that there is no scientific validity to diagnostic labels such as schizophrenia and bipolar disorder.

Indeed, the DSM’s fondness for the categorisation of mental illness is a major reason for its unpopularity in many quarters. According to Gary Greenberg in the New Yorker, frustrated scientists believe its beloved categories “don’t correspond to biological reality”.

Is that a fair criticism? I would argue that the categorisation of mental illness based on symptoms can be useful. But – and it’s a big, fat, hairy but – we must accept that those diagnostic categories are cultural constructions, not global certainties.

Culture-bound syndromes are most often the preoccupation of anthropologists. Typically, the patient displays symptoms that are recognised as indicating a particular illness only by other members of that patient’s cultural group. The dhat syndrome observed in parts of India, characterised by fatigue, anxiety and guilt and usually experienced by men, is a well-documented example of a psychological culture-bound syndrome, as is the susto, or fright sickness, of Latin America.

In a recent editorial in the British Journal of General Practice, Professor Christopher Dowrick argues that depression could be a western culture-bound syndrome, rather than a universal disorder. In support of his case, Prof Dowrick notes the lack of consensus in psychiatry over what even constitutes depression: the endless shifting of diagnostic goalposts.

He points out that there is no discrete genetic variation known to cause depression. Rather, there is genetic overlap across a range of mental illness, including depressive disorder, autism and schizophrenia.

Prof Dowrick’s point is that as China and India become politically dominant, spreading different concepts of what constitutes mental illness, we will have to be more sceptical of our cherished diagnostic categories. “In western anglophone societies we have developed an ethic of happiness, in which aberrations … are assumed to indicate illness,” he writes.

Others have argued that pre-menstrual syndrome, too, is a Western culture-bound syndrome. In 1987, Thomas S Johnson claimed that the symptoms were an expression of “conflicting societal expectations” on women. In 2012, a meta-analysis of published research failed to find evidence that negative mood correlates to the pre-menstrual phase of the menstrual cycle. And earlier this year, a qualitative study found that a “cognitive reframing” of the symptoms could reduce self-reported pre-menstrual distress.

Could depression and PMS really be culture-bound syndromes rather than biological entities? For sure, no one is arguing than they are not genuine illnesses – to the patient, the symptoms are real and painful. I used to be convinced by the biomedical model of depression, but now I’m not so sure. Could depression, and other familiar mental conditions, be interpreted as a kind of local language – our culturally established way of expressing distress and asking for help?

A DSM-style categorisation of illness based on symptoms could still be useful, provided we bear in mind that our local diagnostic categories are no more universal than our local language. We may also need to accept that treatments for mental disorder are not universally applicable. Culture-bound syndromes need culture-bound treatments: interventions recognised as “medicine” by both patient and practitioner.

It’s a very complex subject – not least because there may be crossover between the cultural and the biological; between the BPS’s dismissal of diagnostic labels and the NIMH’s desire to find a biomarker for every illness.

“I think the distinction between ‘biological’ and ‘social’ causes can get tricky. Lots of human practices that are clearly culturally patterned – child-rearing practices, diet, and sleep patterns, for example – affect our biology,” Dr Rachel Cooper, author of Classifying Madness, tells me in response to an email. “You could have cases where a ‘core’ biological disturbance is expressed differently in different cultures. Some have suggested that this might be the case with western-style depression and Chinese neurasthenia.”

And in the end, as Dr Cooper concludes, “A biomarker can only tell you that a person is different – not whether that difference should be considered pathological.” Much of mental pathology could be a consequence of culture.

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  • Freedom From Torture Each day, staff and volunteers work with survivors of torture in centres in Birmingham, Glasgow, London, Manchester and Newcastle – and soon a presence in Yorkshire and Humberside – to help them begin to rebuild their lives. Sharing this expertise wit
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  • Glasgow STEPS The STEPS team offer a range of services to people with common mental health problems such as anxiety and depression. We are part of South East Glasgow Community Health and Care Partnership, an NHS service. We offer help to anyone over the age of 16 who n
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