Self-harm is not just attention-seeking: it’s time to talk openly about the issue

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attention-seeking, Bullying, causes, emotional distress, emotional pain, emotions, isolation, obsessions, pain, physical pain, professional help, relief, secret, self-harm, stress, teenagers, young people

Self-harm is not just attention-seeking: it’s time to talk openly about the issue

Three years ago, with her parents and sisters out for dinner, then-13-year-old Lucy found herself alone in her family’s Lincolnshire home. Dressed in her pink Tinker Bell pyjamas, she began to make herself a cup of tea. Then she spotted an object on the kitchen counter that immediately diverted her attention. “Shall I do it?” Lucy asked herself. “Will it stop the pain?”

For Lucy, now 17, that evening marked the start of a two-and-a-half year struggle with self-harm. Two weeks before, she had been brutally attacked and raped (which she now describes as “the incident”). At the time, anxious they wouldn’t believe her, Lucy never fully revealed to anyone what had happened. In her mind, she tried to repress the rape. She began shutting herself in her bedroom. She told her parents she was feeling unwell. Physical pain, she decided, was the only way to purge her pent-up emotional pain.

“When you keep all your problems in, it feels like you’re screaming inside,” Lucy says. “But when you cut or burn yourself, the pain is more physical. You feel like you’re releasing that scream. After a few months, self-harming became part of my daily routine.”

Eventually, both at school or at home, Lucy was self-harming four times a day. She wore black jeans, black tops and even black gloves to conceal her scars. “I pushed everyone everyone away” Lucy says. “I stopped caring about school. My grades suffered. Self-harm became a real obsession. It took over my life.”

Today, having made a huge effort to stop, Lucy has not self-harmed for more than six months. But self-harm is still on the rise among the UK’s young population. Data published last year by a collaborate study from England Health Behaviour in School Aged Children (HBSC) revealed that up to one in five 15-year-olds across the country self-harm. During the past decade, according to the same study, there has been a three-fold increase in the total number of UK teenagers self-harming.

What drives young people to self-harm? Therapist Jenna Mutlick, who has a personal experience of it, says it is usually some form of “self-punishment”. People believe they have done something wrong – even when they haven’t – and then feel they deserve the pain. “I know a few people who self-harm because they are bullied and eventually come to believe that they then deserve to be bullied,” she says. “When you self-harm, it is so hard to escape from the [mental] space that you are in.”

“It’s a very heterogeneous group of people who self-harm, and there are a variety of reasons why people might start,” says Professor Glyn Lewis, head of psychiatry at University College London. “Clearly, there are people who self-harm because they want to take their own lives, but there are also people who want to self-harm because they are in difficult situations or want to relieve stress.

“As a long-term strategy, of course, self-harm is not very effective,” he adds, “but people do report that they get some form of relief from upsetting thoughts or emotions. Some forms of self-harm are obviously very dangerous, but there’s a continuum. Some people may only scratch themselves very superficially, for example, which won’t do any long-lasting damage.”

The causes of self-harm are likely to be complex, even if the person harming does not see the issues in that way. Kieran, from Glasgow, began self-harming after five years of “constant” physical and verbal bullying at school. His parents split up when he was seven, though he says it was the bullying – which still torments him today – that incited his self-harming. “The bullying made me feel really unbalanced,” says Kieran, now 23. “I started to self-harm when I was aged 11, and it kind of just snowballed from there. I stopped eating. I isolated myself from a lot of my friends and family. I kept it a secret for almost a decade.”

Like Lucy, Kieran says that self-harming became a secret obsession. The bullying made him feel “physically and mentally numb”. Self-harm, by contrast, made Kieran feel more alive, and he would regularly self-harm in his bedroom at night. “It brought me out of my slumber,” he says. “It made me feel normal, and I became addicted to doing it for that reason.” He says that the self-harm was like an “adrenaline shot” that brings everything back into focus.”

Kieran admits that he still has a “daily battle” with self-harm. He is significantly better than he was a few years ago, though, when he would harm himself up to 400 times in one evening. “It’s a high level of emotional distress that causes people to resort to self-harming,” he says. “People sometimes feel like they can’t cope with their emotion. It’s how they cope with life’s daily stresses.”

Chris Leaman, from the UK mental health charity YoungMinds, says it is still very much a taboo subject in British society. “Every year, we work with Childline, YouthNet and selfharmUK to try and combat these sort of stigmas for Self-Harm Awareness Day,” he says. “There is a definite problem around young men not feeling like they can talk about their issues, which can make self-harm quite a common issue among them.”

“Some people do talk about self-harm quite openly, but that’s relatively unusual,” says Professor Glyn Lewis. “A lot of people conceal self-harming behaviour from their friends and family. There are not necessarily signs to look out for; it’s more a case of often asking people how they are feeling, and keeping communication open with them. As a rule, families and friends concerned about someone self-harming always should talk to the person themselves and encourage them to seek professional help.”

Statistically, teenage girls are still more than twice as likely to self-harm than young males, and this has helped create another gender-based stigma: that self-harming girls are simply seeking attention. Fiona Brooks, professor of adolescent and child health at the University of Hertfordshire, who led the investigations for last year’s HBSC report, identifies this as a prevalent problem. “Nowadays, young people are in a much more uncertain world than before,” she says. “Instead of self-harming just being dismissed as attention seeking, it’s something that needs to be taken seriously. Equally, if young girls are self-harming for attention, that’s a different matter that needs to be taken just as seriously.”

Lucy thinks back on that evening she started self-harming, and wishes that she could tell herself to stop – and talk to someone. Talking, like with most former self-harmers, has been a significant part of Lucy’s recovery, but she also credits her own determination as a decisive factor. “If you don’t want to stop, you won’t,” she says. “In the end, a lot of it comes down to how you see yourself. I used to feel people were always judging me, but now I feel I don’t care what they think. Why should I let them control my happiness?”

Domestic violence could be stopped earlier, says study

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abuse, abusive relationships, Children, coercion, control, coping, danger, domestic abuse, domestic violence, fear, harm, health workers, help, impact, isolation, murder, police, professionals, relationships, risk, serious injury, teenagers, training

Domestic violence could be stopped earlier, says study

Victims of domestic violence are abused for almost three years before they get the help they need, and some are subjected to more than 50 incidents during that time, according to a study of the largest database of domestic violence victims in the UK.

The figures from the domestic abuse charity SafeLives reveal that almost a quarter of “high-risk” victims have been to an A&E with injuries sustained during violent abuse, and some went as many as 15 times before the problem was addressed.

Analysis of the SafeLives database, which has records of more than 35,000 cases of adults experiencing domestic abuse since 2009, found that 85% of victims had been in contact with an average of five professionals in the year before they got “effective” help from an independent domestic violence adviser (IDVA) or another specialist practitioner.

“Time and time again no one spots domestic abuse, even when victims and their children come into contact with many different public agencies. It’s not acceptable that victims should have to try to get help repeatedly. This leaves victims living in fear and danger and risks lifelong harm to their children,” said Diana Barran, the chief executive of SafeLives, which was previously called Co-ordinated Action Against Domestic Abuse (Caada).

Barran said the study was “more shocking evidence” that domestic violence could often be stopped earlier. “Every conversation with a professional represents a missed opportunity to get victims and their children the help they need,” she said.

SafeLives estimates that there are at least 100,000 victims at high risk of murder or serious injury in England and Wales, 94% of them women.

The study found that victims and often their children lived with abuse for an average of 2.7 years. Three-quarters reported abuse to the police, and 23% went to A&E because of violence sustained in abusive relationships.

Frances Wedgwood, a GP in Lambeth who provides training on domestic violence to health workers through the national Iris project, said a challenge for doctors was that many women did not come to them to disclose domestic violence.

“Domestic violence is still a very hidden problem and in my experience women do not disclose if they are not asked,” she said. “We need to get better at asking people directly if they need help.”

The study sheds light on the long-lasting impact of living in a family coping with domestic violence. According to the survey, in about a quarter of cases on the domestic violence database the victim has a child under the age of three. The study estimates that 130,000 children in the UK are living with domestic abuse, and that children are directly harmed in 62% of cases.

Among teenagers who suffered domestic abuse in their own relationships, almost half had grown up in households where violence was commonplace, the study found.

Vera Baird, former solicitor general and the current police and crime commissioner for Northumberland, said professionals needed help and training to have the confidence to deal with domestic violence.

“Domestic abuse is not a one-off violent attack. It is deliberate long-term use of coercion to control every part of the partner’s life. Violence, sexual abuse, financial control, constant criticism, isolating from family and friends are all familiar tools,” she said.

“People in that situation do not find it easy to speak and need those who could help to be alert. The alternative is what these figures suggest: victims and their families locked unnecessarily into cruelty and ill-treatment for years.”

Case study

Rebecca, 34, lived with domestic abuse for eight years before she sought help

One time I was having a nap in the afternoon, the baby had been teething so I’d been awake all night, and I woke up he was standing over me with a mop handle carved into a point, like a spear. He was pushing it into my throat, accusing me of cheating. Then he picked me up and threw me against the wall. I ran downstairs but he followed me, kicking and punching me and split my lip.

I locked myself in the bathroom and called 999. When the doorbell rang I heard chatting, calm talking. There was one young male officer, and my ex-partner was telling him that I was postnatal, that I’d gone mental and he was just defending himself. I started shouting at the officer: ‘Why aren’t you helping me?’ I swore and the officer said people could hear me, and it was a public disturbance so I swore again. He put handcuffs on me. He wouldn’t let me put my shoes on, so I wouldn’t move, and he lifted me up by the handcuffs and put me in the back of the car.

I was in a cell for hours asking for a solicitor. The duty sergeant finally came and when he opened the hatch he could see I’d been attacked. He got the officer to come and apologise to me and asked me if I wanted to file a complaint, or if I wanted to press charges against my partner. But I said no. I was exhausted and my baby was at home with my partner, who’d been drinking since the morning. It got worse after that. He was sort of smug, saying he could do what he wanted. I know there’s more training for police now, but that put me off calling the police for years.

By 2003/4 the abuse was worse. We had two girls by that time. I was hospitalised with concussion after he’d kicked me in the head wearing steel-toe-capped boots. The police and the paramedics came and I was patched up and sent home. They asked me if I wanted to press charges but I didn’t want to go through all that, I thought it would make it worse. I didn’t know where the support would come from, where I could get help.

Another time I went to the hospital walk-in. I had a black eye and it wasn’t getting better. A doctor asked me what had happened and I said I’d been punched in the face. He repeated what I said: ‘You were punched in the face.’ I didn’t know what he wanted me to say. I was ashamed, I didn’t want to say my husband did this to me. If he had asked, I’d have told him. But he didn’t.

Social services got in touch because of the paramedics’ reports; he got put on an anger management course. But Christmas Day night he’d been drinking. He grabbed me by the throat and I stumbled and fell; he kept kicking me over and over again. My teeth went through my lip, my nose was bleeding, I couldn’t see. He picked me up and carried me to the bathroom saying: ‘Look what you made me do. Why did you do that?’ I crawled to the living room and phoned the police before he ripped it out of the wall.

I did press charges that time. He was sentenced to four months for ABH. He served two. We were separated, but we got back together. Why? I had such low self-esteem and he was always there, always pestering me, grinding me down. He’d be so nice, helping with the children and I was exhausted, I needed the help. I thought it might be OK.

It was OK for a while. The kids had been on the at-risk register because a couple of incidents had been reported, but they came off that and social services were visiting less. His behaviour just went back to the way it had been before, and that’s when I decided to leave.

I remember the exact moment when I saw the sticker for the Women’s Aid helpline: it was on the back of the toilet door in Asda. It took me a couple of months to call but when I did they offered me refuge. I didn’t even know that existed. They organised transport when he was out. It was quite surreal, but it was such a relief.

Women’s Aid were so helpful, they gave us so much support including counselling. My eldest daughter was seven when we left, her sister was three and their brother was nine months. That was the main reason I left, I was terrified for my kids.

I do think professionals should offer support. If they can’t support victims themselves, they just need to know who can. I think if I’d had that information I would have left earlier.

I was 16 when we got together; he was 23. By the time I was 17 we had a daughter. I thought it was a good relationship, he helped with the parenting and around the house, but about a year later, in 1999, slowly controlling behaviour crept in. He wouldn’t like certain friends, or me going out without him, wearing certain clothes or makeup. It was quite subtle at first, but then when we argued there was pushing, then hair-pulling – each time it was a little worse than before.

Soon it was normal to have slapping, kicking, punching, throwing things. At first I didn’t tell anyone; my self-esteem was very low. I just tried to pretend it wasn’t happening, I didn’t know anything about domestic abuse.

Self-harm sites and cyberbullying: the threat to children from web’s dark side

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Bullying, Depression, mental health issues, self-harm, social networks, suicide, teenagers, young people

Self-harm sites and cyberbullying: the threat to children from web’s dark side

“Some of the images do scare me, especially if it’s my friends. Once my friend cut lines down the side of his face as a ‘Chelsea Smile’, he put it online and it was the worst thing I had ever seen. He’s my friend, I don’t want to see him that upset. He got so much hate for it and ended up going into hibernation, nobody heard from him for over a week and we honestly thought he had killed himself.”

Frankie* is 15 and lives in the Midlands. For the past year or so she has updated her Tumblr blog most days. On other social networks she uses her real name, but on Tumblr – a blogging platform – she shares her darkest thoughts about depression, anxiety and self-harm anonymously. “The other day I put up a self-harm picture,” she says. “I was alone and in a dark place. […] Of course, nobody would help, but posting it boosted my confidence a little; finding it buried in amongst all the other self-harm posts reminded me I’m not alone.”

Fears about self-harm sites have been growing since the suicides of two teenagers who, it emerged, were obsessed with self-harm and depression blogs, with mental health campaigners and experts warning that the UK’s teens are at risk of becoming a lost generation if parents and adults cannot reach out to them across the digital divide.

Tallulah Wilson, a 15-year-old who killed herself in 2012, was caught up in a “toxic digital world”, according to her mother, while the parents of Sasha Steadman, a 16-year-old who died from a suspected drug overdose in January after looking at self-harm sites, said her “impressionable mind” had been filled “with their damning gospel of darkness”.

For the uninitiated, self-harm blogs present a surreal world of fantasy and pain. Countless sites dedicated to self-harm and depression are filled with images of bleeding wounds juxtaposed with pixelated gifs, flickering eerily with snippets of Hollywood angst. Helen, who is now 18, visited them regularly, before stopping to help herself move on from self-harming. “You have people asking you how to cut yourself deep enough because their therapist said it wasn’t bad enough,” she says. “I have had people tell me to kill myself. I think the most traumatic is when you find someone’s suicide note online and there is no way to actually get in contact with the person.”

Isolated and lonely, she used the blogs because they gave her a sense of belonging. “You want to find people who are similar to you. That is what humans do,” she says. “It starts off as trying to help, but then it becomes competitive and dangerous. You get sucked into this world of who can cut the deepest/be the skinniest and avoid notice by the outside world. You end up spending hours a day searching these sites for reassurance, but it just makes it harder.”

Keeping children safe online is the “child protection challenge of this generation”, according to Peter Wanless, head of the NSPCC. ChildLine, part of the organisation, registered an 87% rise in calls about cyberbullying last year, a 41% increase in calls about self-harm, and a 33% increase in calls about suicide, with the biggest increase among 12- to 15-year-olds.

While the internet provides unprecedented opportunities for young people to communicate and learn, it can be a dangerous place for vulnerable teenagers, says Sue Minto, the head of ChildLine. “Children are communicating in a way we have never seen before – all the time and instantly,” she says. “Personally, I think this kind of relentless exposure is the biggest challenge we have ever faced.”

Minto notes that while peer pressure and bullying have been around for a long time, the ability to be contacted at all times is new. The cloak of anonymity can lead children to make comments they would shy away from in “real” life, she says. “The pressure on children is immense and very worrying – there is no break for these young people, it is quite relentless. Children who are being bullied tell us there is no point in turning off their phone, because the messages will just be there waiting for them.”

A recent survey carried out by youth charities ChildLine, Selfharm.co.uk,YouthNet and YoungMinds revealed that 61% of the 4,000 young people who responded said they self harmed because they felt alone, while 25% cited bullying. Almost 40% said they had never spoken to anyone in the “real world” about it.

Rachel Welch, director of Selfharm.co.uk, which supports young people affected by self-harm, says there is a huge gap between what adults see of the online world and their children’s experience. “So many young people are drifting into a world where they are completely disconnected,” she says.

But how dangerous are self-harm sites? Do they simply show teenage angst and creative expression, or highlight a worrying deterioration of teenage mental health?

Mary Hassell, the coroner presiding over the inquest of Tallulah Wilson, was concerned enough to write to Jeremy Hunt, the health secretary, to warn him of a risk of future deaths without a greater understanding of children’s online worlds. Although Tallulah was treated by healthcare professionals, they didn’t have “a good enough understanding of the evolving way that the internet is used by young people, most particularly in terms of the online life that is quite separate from the rest of life”, she wrote.

A study into possible links between suicide and the internet has just been commissioned by the Department of Health and will report in two and a half years: a department spokeswoman said children’s mental health was a priority for the government and pointed to the introduction of “family-friendly filters” and internet safety into the national curriculum.

But for Sarah Brennan, chief executive of the youth mental health charity Young Minds, the real issue is ignorance of the scale of the problem, or even denial that the problem exists. The current NHS commissioning of youth mental health services is based on data collected in 2004 – the year Facebook launched.

“It is shocking that the government is allowing NHS commissioners to plan services based on out of date and inaccurate data,” Brennan says, adding that a Young Minds freedom of information request recently revealed that 34 out of 51 local authorities in England have reduced the budget for their children and adolescent mental health services since 2010, while a Community Care/BBC investigation this week showed that a growing number of seriously ill children are being admitted to adult psychiatric wards or sent hundreds of miles from home for hospital care.

“We are sitting on a ticking time bomb here,” says Brennan. “At the same time that we are seeing an increase in need, youth mental health services are being cut. There is an explosion of bullying online and young people struggling to cope with mental health issues, anxiety, eating disorders. If we don’t do something about it we could have a lost generation.”

What can be done? Since Tallulah Wilson’s suicide, Tumblr has introduced a warning that pops up when users search for terms related to self-harm, directing them towards sites offering support and calling on users to report blogs with “inappropriate content” so they can be taken down. A Tumblr spokeswoman said the site was “deeply committed to protecting our users’ freedom of expression”, but that it draws lines “around a few categories of content we consider damaging to our community, including blogs that encourage self-harm”.

And while there have been calls to shut down certain sites, such as Ask.fm – which allows users to ask anonymous questions and has been linked to teen suicides – teenagers and professionals spoken to by the Guardian agreed that simply banning sites or “dangerous” search terms was futile. Regulation can also backfire – recent efforts to impose opt-out “objectionable content filters”, backed by the prime minister, have resulted in sites such as ChildLine and Refuge also being blocked.

“We cannot put our head in the sand, simply blame these sites or hope to regulate our way out of this,” says Minto. “We are playing catch-up, but we need to take responsibility. You wouldn’t let your child cross the road without talking to them about road safety and the same goes for the risks of the internet – if we don’t tackle this it’s like opening the door and letting them walk through this cyberworld completely unequipped.”

Welch at Selfharm.co.uk agrees: “Calling for any type of ban is just missing the point. What we have to do is make sure our young people are emotionally resilient, emotionally aware and they know where to go to get help if they need it.”

Others say that while parts of the internet can be dangerous for vulnerable children, it can also provide the means to keep others safe and let them talk about their problems. As many young people contact ChildLine online as call its helpline. Online friends can be a force for good.

Samantha, a 17-year-old who started self-harming when she was 14, says her Tumblr site helped her recover from depression. “I felt like I belonged somewhere, they understood me in a way I felt I had never been understood before,” she says. At one point, she was off school with depression and spent all day online, answering 10-15 messages from other troubled teenagers every day. Now she “has a life” again and is online less frequently. “I’ve been told that I’ve saved lives and it made me feel good about myself that I was helping other people,” she says. “It’s really odd – but it works for me.”

Frankie, who is still working towards recovery, has mixed emotions. While she recognises that some blogs might encourage self-harmers, or make them feel worse, she still believes they can help. “I think for [people] like myself it can be reassuring just to know there are others out there that do it too [but] what scares me is thinking how many there are, how they are all posting it online, are they all cries for help? If that many people are crying for help then something needs to be done, and fast.”

*Names of young people have been changed. If you face any of the issues in this piece, you can call ChildLine on 0800 1111

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

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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

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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.”