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a1000shadesofhurt

a1000shadesofhurt

Monthly Archives: December 2013

Young people are sexting – but that doesn’t mean they necessarily want to be, says research

31 Tuesday Dec 2013

Posted by a1000shadesofhurt in Relationships, Young People

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relationships, sexting, young people

Young people are sexting – but that doesn’t mean they necessarily want to be, says research

With the rise of smartphones and Snapchat, sexting is in vogue – but a new study has found that many young people engage in the practice without really wanting to.

More than half (52.3 per cent) of young adults have engaged in “ unwanted but consensual sexting with a committed partner”, according to research to be published in February in the journal Computers in Human Behaviour.

Most did so for flirtation, foreplay, to fulfil a partner’s needs, or for intimacy, but women were more likely to consent to unwanted sexting because of anxieties about their relationships.

The research, which was carried out by scientists at Indiana University-Purdue University Indianapolis (IUPUI), polled 155 undergraduates in committed relationships on their sexting habits.

Fifty-five per cent of the female respondents said they had previously engaged in unwanted sexting, while 48 per cent of men had done the same.

The results show similarities between sexual behaviour online and off: in both cases, couples will willingly go along with sex, even when they do not feel like it, from reasons ranging from satisfying their partner to avoiding an argument.

But while women are often considered to engage in unwanted sex more than men, the research shows only a small difference in the number of men and women partaking in unwanted sexting.

The authors of the article argued “gender-role expectations” could be to blame. Men might be more likely to agree to undesired sexting because doing so is “relatively easy and does not require them to invest more into the relationship,” while women might be discouraged from virtual sex because it fails to help them attain their relationship “goals”.

The survey also showed that people who were anxious about their relationships were more likely to send begrudging sexts, in a bid to alleviate fears about alienation or abandonment by their partners.

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.

Old enough to know better: how teenagers cope with a parent’s cancer

10 Tuesday Dec 2013

Posted by a1000shadesofhurt in Cancer, Young People

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adolescents, Cancer, Children, communication, family, information, parents, responsibility, teenagers, young people

Old enough to know better: how teenagers cope with a parent’s cancer

My daughter Maya is in the family room watching TV. I’m heading out to buy ginger sweets for my wife, Marsha, who’s upstairs in bed, feeling queasy after her latest round of chemotherapy.

“Going to get something for Mum; be right back,” I call to my 15-year-old.

“How is she doing?” asks Maya.

In my head, I think: “Why don’t you ask her yourself since she is just one flight of stairs away!” But I bite my tongue. I don’t want to add to the tension that cancer has already brought to our home.

Looking back, I realise that Maya wasn’t the only family member to avoid direct communication during the seemingly endless months of treatment for Marsha’s breast cancer. Consumed with all things cancer, my wife and I never asked her and her younger sister, Daniela, who was 13 at the time: “How are you doing?”

Many families find themselves in a similar situation: parent with cancer, teens in the house, not a lot of cross-generational conversation. Tens of thousands of children live with a parent who is a cancer survivor. Roughly a third of those children are 13 to 17 years old. While parents pay a lot of attention to the needs of younger kids, they may figure, as we did, that teens are old enough to cope.

“Adolescents are an unheard group,” says Shara Sosa, an oncology counsellor. Unfortunately, the nature of adolescence fights against openness of any kind, never mind the cancer in the family.

“With their kids locked behind a mask of teen indifference, parents are often intimidated and don’t know how to talk to them,” Ms Sosa says.

Teenagers are pulling away from the family, forging their own identity. The news that a parent has cancer yanks the adolescent back into the fold – exactly where they don’t want to be.

The reaction of a teen to a parent’s illness varies widely. Some respond with a disappearing act: after-school activities, shopping trips, sleepovers, you name it, they’ll do it to avoid the uncertain environment at home. It doesn’t mean they don’t love and care about the parent with cancer – it’s just their way of dealing with it all, says Maureen Davey, a family therapy Professor at the Drexel University College of Nursing and Health Professions, in Philadelphia.

Does that mean these kids are likely to turn to risky behaviour? Mental-health experts say that there are no data to quantify this and emphasise that most of the teens they work with do not act out. Yet typical teen temptations are always present.

Of the 100-plus teens who my daughter Maya and I interviewed for a book we wrote about teens and parental cancer, around 10 per cent confessed that they’d turned to drinking, drugs or vandalism as coping mechanisms.

Elissa Bantug, who was 12 when her mother was diagnosed with breast cancer 21 years ago, felt as if her mother had abandoned her. She drank, hooked up with an older boyfriend and forged her mother’s name 36 times on notes to get out of school. When the school asked her mother to come in for a conference, she felt too exhausted from her cancer treatments to turn up.

It’s impossible to say if Elissa would have acted out if her mother had been well. Still, looking back as an adult, Elissa says: “I felt like no one really talked to me.”

And she had lots of questions: would her mother be OK? What does it mean to be a cancer survivor? How would their family life change in the short run and the long run? Her rebellion, she says, was sparked by a lack of information.

Others respond by defying their developmental stage, assuming responsibilities that normally fall to the parents. Out of sync with their peers, these kids sometimes talk about their real age and their “cancer age”.

“I’m 16, and I have to act like I’m 40,” a teenager named Lyndsey told me. While her mother is in treatment for breast cancer, she says, “I have to cook, clean, make sure my mum eats, my brothers are fed.”

A “parentified” teen will inevitably feel frustrated. Teens may be “angry they have to take over everything and nobody appreciates that they’re doing so much more than they used to,” says psychiatrist Karen Weihs, medical director for supportive care at the University of Arizona Cancer Center in Tucson.

Stacy Hoover, a single mother, learned she had breast cancer when her daughters were 13 years old, and 18 months. She leaned on the older daughter, Megan, which took a toll. “Sometimes I wanted to go over to a friend’s house, but I didn’t want to leave my mum with the baby,” Megan recalls. When chemo made her mother irritable, Megan says: “It was hard not to yell back.”

No matter how the teenager responds, the parents can help shape the child’s frame of mind. That means sharing information, regardless of whether the news is good or bad.

Indeed, several studies establish the value of honest communication above all. Medical psychologist Stacey Donofrio looked at nearly 300 adolescents in the Netherlands who were coping with a parent’s cancer. She found that “the intensity of the parent’s treatment” for illness was not as important in influencing adolescent reactions as the way parents talked to the kids about it.

“Adolescents may feel especially uncertain if they feel their parents are not being entirely open,” she said.

Such an information gap elevated the tensions for Jackie Shmauch, a teenager whose father had leukaemia. One night, the 14-year-old fled her home in tears after eavesdropping on a call from her father’s oncologist. Jackie thought her father’s leukaemia was in remission, but she overheard a discussion of a bone-marrow transplant. After her parents found her at a friend’s house, they explained that the transplant was a preventive measure, not a sign that the cancer was back. That’s when Jackie delivered her ultimatum: “If there is information you have and you think you shouldn’t tell Jackie, that’s what I want you to tell me.”

Yet not every teen is like Jackie.

“If your child says, ‘Talking about this with you is not helpful to me’, it’s important to respect that,” says child psychiatrist Paula Rauch, who directs the Marjorie E Korff PACT Program (Parenting at a Challenging Time) at Massachusetts General Hospital in Boston.

It is critical for parents to remember that, cancer or no cancer, they still need to keep an eye on their teenagers – no easy task, especially when one of the parents is ill. The key, Ms Sosa points out, is listening closely even though “your head is in so many different places” because of the cancer diagnosis. That means asking follow-up questions, even challenging your teenager at times. If teens know you’re truly paying attention, she says, “they’re going to tell you all sorts of things”.

Some teenagers may just need a break from all the care-giving – perhaps by having other family members or friends shoulder the young person’s chores from time to time.

“Just to be 12 again, that was really quite a blessing,” recalls Bailee Richardson, now 19, who cared for her two younger sisters while her mother was being treated for breast cancer and her stepfather was working out of town.

A decade after my wife’s diagnosis, Marsha is in good health, but she and I are just beginning to understand how the experience affected our daughters. Maya tells me how uneasy she was with her mother’s bald head, courtesy of chemo, and that she found relief from the free-floating cancer anxiety that infiltrated our home by turning to friends, even if they didn’t quite understand what she was going through. And she’s sorry she didn’t help out more.

I, too, was sorry she didn’t step up. But I made the mistake of assuming that Maya and her sister could read my mind. I once exploded when my daughters didn’t rush to my aid as I dragged in bags of groceries after a day of errands.

“Can’t you give me a hand?” I yelled.

Maya calmly said: “We’d be happy to if you’d ask us.”

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

01 Sunday Dec 2013

Posted by a1000shadesofhurt in Uncategorized

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Holly Greenbury

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

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

Dawn Vago

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

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

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

Elizabeth Jo Roberts

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

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

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

Sarah Graham

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

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

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

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