Guest blog: My son's battle with anorexia(41 Posts)
Eating disorders amongst boys and men is on the rise: a recent study found that the number of males being diagnosed with conditions such as bulimia and anorexia rose 24% between 2000 and 2009.
In today's guest post, Mumsnet blogger Bev Mattocks recounts her son's battle with anorexia - from the first confusing signs of 'over-exercising', to his eventual recovery.
Let us know what you think: is the rise in eating disorders amongst boys and young men something that you're aware of - and would you be able to spot the worrying signs in your own children? If you blog about this issue, don't forget to post your URL.
"Back in the summer of 2009 when my rugby-mad 15 year old son, Ben, began to show classic signs of anorexia nervosa, I didn't know that boys got eating disorders. I knew something was wrong - and that it appeared to be getting worse - but I had no idea what 'it' was. As the parent of a teenage boy you don't expect your child to get anorexia. You don't even think about it.
Like many people, I'd assumed that anorexia was a 'diet gone too far', and therefore a condition that only affected teenage girls. There was a skeletal girl at our gym who used to punish herself on the treadmill. How could she let herself get like that, I wondered. How could her parents let her get like that? It's got to be the parents' fault.
I know now that her parents were probably very nice, very ordinary people who were worried senseless about their much-loved daughter. They weren't 'letting her get like that' - and nor was she. Anorexia isn't a lifestyle choice like a diet or an exercise regime; it's a biological mental illness that can affect anyone of any sex from any social background and any country. And parents are NOT to blame.
People don't choose to 'get' anorexia; it just creeps up on them, usually when they lose too much weight for whatever reason - stress, illness, slimming, whatever. The cause isn't clear but up to 86% of eating disorders are thought to have genetic roots. And around 1 in 10 people affected by eating disorders in the UK are male.
Over that summer of 2009 my son, Ben, began to behave strangely. He developed an obsession with 'healthy eating' and low calorie/low fat cooking, cut himself off from his friends and exercised round the clock. At the same time he was gradually losing weight and his mood was heading south. But the penny didn't drop because we didn't know that boys got eating disorders - or even what a developing eating disorder looked like. Nor did we know that a whole package of horrors comes with anorexia.
Anorexia isn't just about cutting back on food and losing weight, it's about crushing depression, vicious mood swings, violent self-harming, suicide threats, social isolation and complete and utter consumption by this terrible all-embracing mental illness as your child transforms into someone you don't recognise - mentally and physically. Ben even developed a different voice: a slow, low, deep monotone that used to chill me to the core. And you haven't known fear until you've had to pull your beloved son in through the attic window as he attempted to climb onto the house roof.
But back at the start we didn't know that you don't have to be a skeleton to have full-blown anorexia. Nor did our GP, because it took weeks to get Ben diagnosed. We were then faced with a three month wait for treatment. Meanwhile Ben's illness reached ever more terrifying depths.
Two long and arduous years later Ben emerged from treatment - an appalling non-stop rollercoaster of nightmarish events that transformed us from a normal, happy family into a family living on a knife-edge. It took a further year, some additional private therapy and a failed attempt at university before the 'old Ben' gradually began to emerge again. Today, nearly four years after that summer of 2009, I'd say he is 99 per cent recovered.
But one thing that's proving difficult to shake off is the fear, anxiety and panic that comes with social situations. Anorexia is notorious for isolating its victims and while his friends got on with their lives, the once popular Ben disappeared into a vacuum. As a result he's missed out on four years of life skills, almost a fifth of his young life. His friends have deserted him and he spends every evening alone, which isn't what it should be like when you're 19.
Ben's recovery from anorexia has been a long haul that's left our family emotionally scarred - each one of us. I still have flashbacks that keep me awake at night. I still find myself shouting in my sleep. I still worry that Ben's anorexia will return. But most of all I want Ben to get his social life back - to pick up where he left off four years ago and have a happy and fulfilling life.
I want that more than anything else."
Bev Mattocks is the author of Please Eat... A mother's struggle to free her teenage son from anorexia which describes her son's anorexia and its impact on her family. Her second book When anorexia came to visit: Families talk about how an eating disorder invaded their lives has just been published, with a Foreword by Professor Janet Treasure OBE.
Follow Bev's blog: AnorexiaBoyRecovery.
I am sorry you find my tone cold and unsympathetic. Maybe having read that parents are toxic and sometimes totally at fault for a patient's eating disorder may have got my Irish up a little.
" However to categorically state that no person with anorexia ever has had their disease triggered, maintained or compounded by poor parenting on the basis of a few decades of research seems very premature given so many theories of neurodevelopment etc"
I agree, wholeheartedly, but I suspect for different reasons from you. Have you read the Nurture Assumption by Judith Rich Harris (paper available on Google Scholar)? It appears that the peer groups are more likely to have a greater effect on a child's psyche than parents do. In fact, it is now pretty clear that children probably have more non-genetic effect on parents than vice versa.
Inherited personality traits can often confuse the correlation/causation issue. For example, whereas the children of abusers often become abusers themselves, the step-children of abusers do not. Ergo, inherited personality traits (such as sensitivity perfectionism and even disordered eating behaviours) may be to blame for the onset of an eating disorder. To blame parents for the genetic make-up of a child, especially when the epigenetic influences may "turn on" a genomic sequence that can trigger an eating disorder may be going a little too far?
As I said above, whilst I don't discount the effect of the environment when discussing eating disorders, I find it difficult when both biology and genetics are discounted and environment is regarded solely as "to blame". It is very difficult to take that kind of criticism, as a kind, loving parent (even if flawed) without springing to the defence of the hundreds of kind loving parents of children with eating disorders I know, along with the patients with eating disorders who are immensely distressed at the thought that their parents are somehow to blame.
It is important to note that Freud's psychology, Watson's behaviourism and Mead's anthropology nurture-determinism by parents was never tested, only assumed. Modern evidence from twin studies, children of immigrants and from adoption studies concludes that people get their personalities from their genes and their peers, not their parents.
Yes on the Free Will - as long as you don't equate determinism with fatalism.
The point of my blog post, however, is that Boys Get Eating Disorders, not just girls because it is still widely thought of as a teenage girls' condition.
I'm not sure what people mean when they say an eating disorder is "biological." If you mean that a person may be susceptible or predisposed to develop anorexia, then that provides some biological basis, but it's incomplete and vague. People are not born with eating disorders, and they have differing degrees of susceptibility. A predisposition to anorexia does not means that someone is destined for an eating disorder, just like the obesity "gene" does not mean someone will be overweight, the alcoholic "gene" does not mean someone is destined for alcoholism. Even genes linked with cancer determine whether someone will get that cancer. If you equate brain "disorder" with susceptibility, them most of the population can claim a disorder of some kind. Causes of eating disorders are multi-factorial, and while genes play a role, environment matters significantly. Separated twins, for example, do not always develop the same characteristics. People without the "anorexic" gene develop eating disorders, while others with this gene do not. While parents are not the cause of an eating disorder, just like gymnastics coaches, the modeling industry, and magazine covers, environmental influence can contribute to the multi-dimensional mix that triggers an eating disorder. Parents who physically or emotionally abuse their children, or are overly controlling, have harmful effects on a child's self esteem and emotional development. The prevalence of eating disorders in female athletes may be due to contributing factors such as pressure to remain thin and high standards of a particular sport. Ultra-thin models on magazines in the grocery aisle may spark someone to unnecessary and unreasonable dieting. To say that none of these factors matter strikes me as dangerous. They may not cause an eating disorder, but they play a contributory role. There's no room for blame or fault. But an eating disorder is not solely genetic.
I'm not sure what people mean when they say an eating disorder is "biological." If you mean that a person may be susceptible or predisposed to develop anorexia, then that provides some biological basis, but it's incomplete and vague. People are not born with eating disorders, and they have differing degrees of susceptibility. A predisposition to anorexia does not mean that someone is destined for an eating disorder, just like the obesity "gene" does not mean someone will be overweight, and the alcoholic "gene" does not mean someone is destined for alcoholism. Even genes linked with cancer don't determine whether someone will get that cancer. If you equate brain "disorder" with susceptibility, then most of the population can claim a disorder of some kind. Causes of eating disorders are multi-factorial, and while genes play a role, environment matters significantly. Separated twins, for example, do not always develop the same characteristics. People without the "anorexic" gene develop eating disorders, while others with this gene do not. While parents are not the cause of an eating disorder, just like gymnastics coaches, the modeling industry, and magazine covers, environmental influence can contribute to the multi-dimensional mix that triggers an eating disorder. Parents who physically or emotionally abuse their children, or are overly controlling, have harmful effects on a child's self esteem and emotional development. The prevalence of eating disorders in female athletes may be due to contributing factors such as pressure to remain thin and high standards of a particular sport. Ultra-thin models on magazines in the grocery aisle may spark someone to unnecessary and unreasonable dieting. To say that none of these factors matter strikes me as dangerous. They may not cause an eating disorder, but they play a contributory role. There's no room for blame or fault. But an eating disorder is not solely genetic.
The latest research using MRI-type imaging is showing that anorexia brains can appear different to other brains, so you might say that, although people aren't born with eating disorders as such, certain individuals could have a far higher susceptibility to developing them during their lifetime than others.
I agree that the alcoholic "gene", as you put it Adamusc, does not mean that someone is destined for alcoholism, but I firmly believe that it can lead to it in some circumstances - alcoholism can run in families, indeed it runs on one side of our family, but if you teetotal, then it is very unlikely that you will become an alcoholic just as, if someone is predisposed to an eating disorder, they may never develop it if their weight never dips to a low level. This makes so much sense to me.
I am uncertain if I am being pointed out as saying that an eating disorder is solely genetic. If so, I haven't. I have, in fact, repeatedly said it is a dance between genes, biology and environmental factors.
However, I do think that this constant emphasis on abusive parents is misleading - the incidence of abuse in anorexia nervosa is the same as in the general population. Not all abused children develop an eating disorder. Not all eating disorder patients have been abused. I think child abuse is despicable (and a hanging offence in my book!) BUT to constantly start every discussion with abusive parents when discussing eating disorders is equivalent to starting every discussion about childhood diabetes with the same "spoiler alert".
Controlling parents, Adam, may indeed pass on their "controlling" genes to their children (see above) but not to their step-children. When you talk about a controlling parent, are you talking about a parent who may have their own mental health problems? Such as OCD, rigidity, inability to set shift, perfectionism? All traits that are typical of an anorexia nervosa sufferer? Or perhaps high anxiety as can be found in a Bulimia patient and a BED patient? How can you differentiate between what is an inherited genetic trait and what is an "environmental" factor in these particular cases? How can you differentiate between the reaction of a child who has inherited the type of personality traits that pre-dispose a person to an eating disorder and a child who has not? Twin studies have ruled out the influence of parenting style with the regards to the onset of an eating disorder.....
As I said above, it has been shown that a child's peer group is more likely to have a larger environmental impact on a child's psyche than a parent. Parents are more likely to be impacted by their child in the generally agreed "environmental" sense.
The work of Nunn, Lask and Frampton may yet "prove" a difference in brain size/function for those people with anorexia nervosa but we still have a long way to go.
Also the role of epigenetics seems to be being ignored here.
To discount any of the three major factors - biology, genetics and environment - is facile. I think those who have read around the subject all agree there is no one cause for an eating disorder and no one identical path that leads a patient to loose weight and set off a chain of events that lead to the misery and potentially lethal place that is an eating disorder. Ergo, to blame parents (as per the first post in this particular comment section) is really not correct on any level.
To continue to try and "pin the blame" on parents and insisting on environmental factors as being the "major" contributor to an eating disorder is, quite frankly, a straw man argument.
An eating disorder is a perfect storm.
Hi Carlotte and Bev,
I agree with both of you. I've repeatedly said that parents are not the cause of eating disorders. No one should be blamed for this complex illness; blame is unhelpful and unwarranted. Nor have I said that environmental factors are a "major" contributor to eating disorders, or that anyone chooses to engage in disordered eating. What I have said is not controversial--environmental plays a role, as does genetics and epigenetics. What I'm looking for is a balanced, comprehensive approach that can improve treatment and outcomes.
Absolutely, we all want to improve treatment and outcomes. At present eating disorder treatment for young people in the UK appears to be patchy - a postcode lottery. And GPs have little training in mental health and eating disorders, as do some other health professionals, for example staff in A&E which can be the first port of all for an individual or family in distress.
Another thing that is disturbing is that there is still a whole range of different treatment models for eating disorders, some of which focus on re-feeding the individual first followed by the "talking treatment" second - and others that do precisely the opposite. Some treatment teams / models involve the parents while other teams exclude them. Who you get, which particular model(s) they follow and, indeed in some areas of the UK, whether you have access to any treatment at all, seems to vary widely. Having said this, I recognise that eating disorders are notoriously difficult to treat and that a "one size fits all" approach to treatment is always unrealistic.
And then there is the issue of when a young person reaches the age of 18 and no longer qualifies for adolescent services. Many young people encounter problems or fall through the net at this stage with poor or non-existent transition to adult services.
But, yes, we all look forward to the day when there is a more "balanced, comprehensive approach that can improve treatment and outcomes", as you say Adamusc
Bev the issue with neuroscience is that nearly every clinical disorder can be found to be related to differing brain structure... recently there's been research that people who do mindfulness meditation exhibit changes in brain structure from meditating. In part this is because neuroscience shows us how brains light up/activate when engaged in patterns of behaviour and in part, ongoing patterns cause more rapid responses in activation, sort of like how a body builder has stronger muscles. It's a chicken and egg thing. Of course the patterns of thought and behaviour that people with anorexia engage in will change how their brains appear to be structured but in itself this does not AT ALL mean they were, to quote Lady Gaga, 'born this way'.
There's a bit of an obsession with the brain these days but actually so, so little is known about it. A friend was told her daughter's right-sided stroke would mean she would never sit, walk, talk. Not true. A colleague who had encephalitis was deemed a vegetable but now walks and talks and plays table tennis. People are routinely told depression is a brain chemistry issue as evidenced by how antidepressants work to relieve symptoms, but actually no one is really THAT sure how antidepressants work, or why different people react extremely differently to different types. There are broad generalities in how people behave and these are matched by neurological exam sometimes yet not nearly as much as you might imagine. It seems that really individuals are individuals and it is incredibly rare that our destinies are written at birth. Parenting, peer groups, education, social milieu, individual experiences and preferences, different ways of making sense of the world.. all of these contribute to our humanity and to our suffering, whether it is cancer, anorexia, autism or OCD. Again the question of who is to blame is a pointless one. Far more important to focus on what helps rather than what caused it while we still have so little knowledge about how brains and biology really work.
I agree working9while5, the question of blame is pointless, but one can see from the comments that it is still very much in many people's minds when they first think of eating disorders. As Bev has written in her article, people think that these illnesses are choices made by vain white girls, or inevitably a reaction to bad parenting, whereas in fact they are real illnesses suffered by all sorts of people including men and boys from all sorts of families whether good, bad or indifferent.
These dangerous misconceptions matter because while people, including parents and those like GPs and A&E staff who can intervene to save lives, quibble about cause or choose not to take these illnesses seriously, sufferers struggle, become more unwell and can even die.
Looking at the neuroscience behind these illnesses isn't avoiding focusing on what helps, it's exactly the opposite. In treating these illnesses seriously and investigating their biological underpinning the researchers who are doing such work are striving to find more effective treatments. Consideration of the biological underpinnings of an illness doesn't mean ignoring the patient as an individual, or considering him or her unfixable, it's one of the most important (but of course never the only) way of finding ways to treat the illness.
Ellab, I'm not really quibbling about using neuroscience to better understand the mechanisms or course of anorexia or any other mental distress, I just have found myself with OCD (which is a sister illness to anorexia in some ways, with similar personality profiles etc) that too often it is referred to in a fatalistic nativist sense... excusing or obviating the need to look at any and all other aspects of human experience.
We see this with depression too... it's all about brain chemistry, no different to a broken leg etc and for many health professionals anything that even hints at the deep suffering of the human spirit is a bit woo and non-evidence based etc. Even the idea that neuroscience is one of the most important avenues in terms of cure etc seems premature to me. It is one facet, no more and no less.
Ultimately viewing these experiences of human suffering as being biological will always be big business as pharmaceuticals are money making and in terms of human labour it is nearly always more cost effective to focus on biological cures. I am totally in favour of any and all potential aids to recovery for mental distress but the difficulty is that though drugs can be a very useful part of any recovery plan, they will always carry risks and side effects that more drawn out nonpharmocological treatment won't. I've seen this in my own treatment. CBT is recommended by NICE as first line treatment in pregnancy but the NHS can't provide an evidence based dose so it was drugs or nothing, despite the potential fall out for an infant.
I feel we are being led more and more to see biology as the first and most important cause of all human suffering because economically this has certain benefits. I have no doubt many would view recovery by any means as worthy, and I understand this given the stakes. I just worry in some ways that a prioritization of biology over behaviour is a) a profoundly hopeless sort of position, in which everything not normative becomes 'illness' (women with abusive partners who are poor and lacking social support getting diagnosed as depressed with a pack of pills and no support to change the circumstances that have led to very understandable feelings, women with histories of severe abuse being deemed 'personality disordered' because they self harm and find trust difficult and have fallen into self destructive patterns). It really hovers at the threshold of what might easily be taken up as eugenics, this idea of the perceptible human being who with the right cocktail of drugs can be a Stepford person.
God forbid anyone mention anything spiritual these days - deep self loathing, disconnection and lack of faith in oneself couldn't be anything to do with that deeper, more mysterious part of yourself because it 'can't be proven'. I'm not even talking whacky faith healing here, just the reality that each of us is more than the sum of our parts and that deep distress is something felt at a level beyond physical biology: in the mind, in the heart, in the (whispers) spirit or soul. Scientific evidence is our new religion but like all dogmas it is only partly useful and very flawed in many cases.
We need to talk more about individuals and share stories. I want to hear more about the realities of this illness from the lived experience of those who have had it and those who've supported those who've had it as each story has immense power to inform and educate in a deep and true sense. Dry research and bald facts, statistics and assumptions that 'clinical populations' are even broadly homogenous just doesn't match what I have learned of mental distress in the real world.
A list of books and article and papers you may find helpful in your quest:
Decoding Anorexia by Carrie Arnold (a patient in recovery who talked to many patients and families)
Eating with your anorexic by Laura Collins
Brave Girl Eating by Harriet Brown
Life without ed by Jenni Schaeffer
Eating Disorders and the Brain by Bryan Lask
Adapted to flee famine by Shan Guisinger
Genome by Matt Ridley
http://feast-ed.org/Portals/0/Documents/Library/resource_list.pdf - a comprehensive library
For what it is actually like to help a child with anorexia, there is the Around the Dinner Table forum - a peer-to-peer online forum for parents and carers.
Your position on the spiritual is part of the on-going dualism debate. There is a lot to read around on that subject and I cannot even begin to start. It is, of course, up to the individual to decide for themselves, once they are aware of all the evidence, as to whether the mind is separate from the body, or whether the mind is underpinned by biological processes.
I am very sorry that you have OCD - it is a condition that crosses the boundary into eating disorders as well and is extremely difficult to live with.
One day (I hope!) the DSM will be thrown out of the window and regarded as much like the "humours" diagnostic diagrams are regarded today. To try and compartmentalise a mental illness and make it "conform" to strictly laid down "criteria" is a form of madness, in my view.
The fact remains that eating disorders are the most lethal psychiatric disorder. However, it should also be noted that it (too?) often runs alongside other disorders - such as depression and OCD.
I also agree that there is an obsession with the brain these days. For those of us who have taken accusations of being a controlling overbearing mother or (even worse) as a father suspected of abuse, because our daughter got anorexia nervosa, it is a lifeline. It is the beginning of being able to retaliate against all those people who tried to destroy us AND our family, whilst watching our daughter nearly die of starvation.
I am not a great fan of psychology, in the main. There are some who have restored my faith in their profession but they are few and far between. There are too many who want to find the "cause" of a mental illness and someone to "blame" for it. Family therapy has a lot to answer for because, in my experience, it has destroyed more "good" families than it has cured 'bad".
I am sure you would be horrified if your parents were accused of abuse AS A MATTER OF COURSE and your siblings were interviewed in a separate room by professionals asking about your father. This used to be absolutely the FIRST thing that happened to the family of an eating disordered child and often still is. Stigma and prejudice are hard to get rid of and only disappear when the older generation of clinicians either retire or die.
I am sure you would not want the progress of understanding of mental illnesses and greater understanding of the brain to not be followed and to return to the bad old days of blaming mothers for schizophrenia.
No, I don't think anyone ever wants to go backwards, but the fact that things were very bad doesn't mean that the opposite is unproblematic.
Psychology is an immensely huge field and contains multitudes: the majority of cognitive based approaches are not past or blame focused and the third wave of cbt which emphasizes things like compassion, mindfulness and acceptance are beginning to build bridges between the spiritual/psychological/biological.
When I talk about the spiritual side, I'm not really talking about grand philosophical or theological debates. I'm talking about the bare bones of what these disorders are. Living with extreme self loathing. Feeling hopeless. Feeling rage. Wishing you could disappear. Profound desperation. I don't care MUCH how these are construed: spiritual, psychological, the soul, the heart, the mind, yet reducing them to chemical reactions or biological quirks is mechanistic and not very human in some ways. There is no scientific evidence for art, poetry or literature: yet it exists and is of profound value to humanity for whatever reason.
I have at this stage a broad and very expansive view of my own distress, I think it's just profound worry and doubt. I'm not particularly sorry I have had these experiences though I am not particularly happy I've had them either. It is what it is. I hate the sort of prevailing narrative around these sorts of things: I was a grade A/first class honours graduate with a promising career, newly married and celebrating starting a new family when I Was Struck Down by Debilitating Fear that Took Over My Life and I Fell into an Abyss and now I am Piecing My Life Back Together.
All of this has a factual basis for me but the magazine like packaging of life is unhelpfully reductive. Life is always more complicated than that (though Bev I am saying this lightly and about how culture makes us convey and sanitize distress not having a pop at your account). Life is also not on hold through even the most extreme experiences of distress and all the horrible stuff, where you are selfish and manipulative and myopic in your illness is also part of who you are, not neatly packaged into a tumourlike disease that can be neatly extracted to leave the angel you behind. We all have the capacity for great love and great hatred, to be kind and to be cruel, to be selfless and selfish, to create and destroy. It's a fallacy of modern life to be able to believe the good bits are the real you and the bad bits are just uncomfortable add ons that can be magicked away with drugs/a better environment/therapy. They are still there, you can just learn to compassionately accept them and move on and live a less tortured life.
The path to this may be drugs for some, therapy for others, God or a shamanic quest, a new relationship, finding an artistic passion or a new career. The potential routes out of despair are manifold and I don't believe will ever or could ever be squeezed into any 'how to' guide, care pathway or clinical trial. Research is great as long as it is held lightly: used if it is workable and works, discarded for an individual if it doesn't make a positive difference in getting them out of the dire, life threatening distress. There is much healing in hearing others stories and finding community that understands and can offer the balm and succour of human empathy and kindness.
I know this is thorny too. There are times people have no options but to be sectioned and forcefed or drugged against their to survive. Anything that can prevent or help treat this has to be a good thing but as with everything it's about balance. It wasn't right to blame parents but it's possibly not right to blame genetics or brain structure either. It's about a holistic non-reductive approach that recognises the individual ahead of the disorder at all times from my point of view.
What thoughtful and sensible posts working, and beautifully put too, I hope you are writing about these matters in some more durable way elsewhere!
I work partly on 16th and 17th century material; writers of this period routinely experience and describe physical illness in spiritual terms, which sits interestingly alongside emerging scientific categories and descriptions in the later 17th century, for instance the beginnings of systematic pharmacology. I also know just what you mean about the 'magazine narrative' of serious illness (whether primarily physical or psychological), treating it as if it is an interruption to one's "real" purpose or identity or experience rather than an element of it.
Personally I have found basic mindfulness techniques surprisingly powerful. I wish I had had access to some of these resources when I was a teenager myself (I grew up in a very medically literate, but emotionally very repressed environment: my parents, like many people of their age and background, can acknowledge and discuss physical illness but not emotional distress).
Have you seen the videos on YouTube by Simon Metin? Well worth watching!