Opinion Articles – Sharing Stories of Hope

Stop Press: Here’s how to get your copy of My Kid is Back – Empowering Parents to Beat Anorexia Nervosa as an E-Book: Amazon Kindle Apple iBooks Kobo Ebooks.com

A Tale of a Kangaroo, a Rhinoceros and a Daughter with Anorexia

Animal metaphors help define effective responses

Eating disorder symptoms and their consequences may lead family members to react in particular ways, and the sufferer may feel increasingly alienated and stigmatised, retreating further into eating disorder behaviour. Professor Janet Treasure and her research team at King’s College, London, have developed animal metaphors to illustrate how these instinctive reactions can be unhelpful. Altering these responses is a challenge but with awareness and skills training, life-changing results can be achieved:

Inspirational animal metaphors include:

Jellyfish  — toomuch emotion and too little control
Ostrich  — avoids emotion
Kangaroo  — tries to make everything right
Rhinoceros  — uses force to win the day
Terrier  — uses persistence (often criticism)
Dolphin — just enough caring and control
St Bernard  — just enough compassion and consistency

What does your family comprise?

Changing your behavior and response requires hard work but the reward—that of saving and uniting your family—is priceless.

With a ‘kangaroo’ and a ‘rhinoceros’ for parents, Sarah was facing an uphill battle in recovering from her anorexia, but then the opportunity for caregiver training enabled a breakthrough. Sarah’s mother, Mandy, describes the family experience:

My take home message is I could not have supported my child without caregiver training. Sarah would have come off the rails without it.

Sarah developed anorexia at age twenty. She was in her second university year – she had never been fat – she was tall and slim. I thought: ‘this is a blimp’. I had no idea I had a six-year journey in front of me and that it could be for life. She came home and told us she thought she had an eating disorder, I think she was quite scared, my husband did not believe her – and she went to bathroom and cut herself with a razor and then we both believed her. She was about to go abroad for six months and she was scared.

Sarah’s health continued to deteriorate and she was in hospital for six months. She ‘celebrated’ her twenty-first birthday there. I don’t think she would have responded to treatment efforts any earlier – it was almost like she had to reach rock bottom. I think my scariest time was when I went to the first carer meeting (organised by the eating disorder team at Guy’s Hospital) and met a husband whose wife had been suffering from anorexia for 30 years. Luckily another mum whose daughter was at university was able to give some hope. It is important to have hope.

I began attending the carer meetings when Sarah came home from hospital. Initially my husband did not come – he thought I was making too much of Sarah’s illness and that wallowing in it would make it worse. My husband was under work pressure at the time and could not see Sarah had a problem – even though she was throwing food around the house. He didn’t want to get involved as a carer. I didn’t mind.

The carer support meetings made me aware of what I was doing. I had to give Sarah the confidence to make her own judgements; I learnt she did not need me to give approval. The problem is that when your child is nearly dying, you are desperate for them not to slip back again and it is easy to reinforce their insecurities. My husband is a bit of a rhino (charging in) while I am a kangaroo (protecting in pouch) and so Sarah was getting mixed messages.

Sarah has a brother 29 and she is 26 now. She felt he was a golden boy and that she had a lot to live up to; feeling in his shadow, she wanted his approval, and still does. As a child she went into a shop and the shopkeeper asked how much change she would need, so after that she would make sure she would take exact money from home – she was afraid of being wrong.

When Sarah was at school, she often didn’t go out to the class evenings and cancelled hockey team tours as she didn’t want to be in a group – in hindsight it was something to do with whole thing – she had enough structure at home for the illness not to manifest.

I helped make her not be scared and this was wrong. When she began to get ill, she would eat certain vegetables – imported cans of vegetables – I drove miles to get them – this was ludicrous, looking back – I should have said: ‘No, I won’t do that’. I would protect her from people asking questions, like why she was not at university, and if they were scaring her we would avoid them altogether.

On the other hand, Sarah was happy to go out when very consumed by anorexia – it was like saying: ‘I can be so much slimmer than you can’ – and when she went to hospital she worried she was not thin enough to be in hospital.

I have always been quite a protective mother – my son used to joke that I would not let him go to the corner shop until he was 17.

Sarah discharged herself from hospital after six months as an inpatient, saying she could not move forward ‘with all these other AN girls’ around her. They were in competition with her.  So she came home and remained an outpatient for three days a week, 10am to 4pm, fantastic – for 18 months – and eventually discharged herself again before they thought she was ready – she worked for a few years and went back to college – and now we have the big question, what will she do next?

She is still living at home – this is common for her generation but she feels embarrassed as she has much to prove; she does not want to live in a flat with people, she wants to be on her own. She does not socialise much.

Our carer meetings warned us about Sarah retreating, going into her room, not communicating; we were told that this indicated a danger of relapsing. Sarah has not relapsed. Nothing major. She is very determined not to relapse – hospital scared her – those were dark times she does not want to re-visit.

Before Sarah’s illness I liked to present to people that everyone was happy and that we had no problems and now I realise all families have difficulties and problems – it is important to let others know things are not perfect. Sarah was blaming my husband totally at one stage for her illness; this strained our relationship – he was obstinate about her illness and this made things very difficult.

At one stage Sarah just want me for herself. Now she is a lot better, my husband and I can go on holiday for a week and Sarah is fine.

We had quite a few discussions with Gill Todd (Guy’s Hospital caregiver course leader) and she liked my husband and she was on his side a bit which was good. He is quite old school and a lawyer and he would argue back and skim over the books rather than really read them; he did not want Sarah’s illness to be a life mission but he did change and became more open. He is quite driven, a perfectionist himself. He had to learn to stop what he was doing and talk to Sarah if she wanted to talk. He has become softer. We are not dolphins.

Our son is an actor. We had our first family therapist session in hospital and he came along for a day, and Sarah seemed quite hurt that he hadn’t shown interest before. He wrote a poem for her that she loved but she immediately thought she could never write like that – the illness again. He told Sarah the most boring thing about her was her illness – not her. He could upset her and make her question herself; he pushes the boundaries.

This next carer course was about reflectiveness and involved role-playing. I felt I was treading on eggshells deciding what to say to Sarah and how to respond to her and this course was very helpful.

It’s about emotional intelligence – you try to understand but put up blocks sometimes. This skills-based course gives you a way to listen to what your child is really saying, and learn to listen well and have calm reactions. When feeling horrified or shocked at your child’s illness, you cannot help them when like this – you have to lower your expectations of what your child can do – they are on a journey and we have to be brave enough to hear criticisms about ourselves from our child as we all do things wrong.

The course gave me encouragement to accept this. The unacceptable social behaviours that go with anorexia – I sometimes would ignore this behaviour in Sarah; I learnt I had to behave in a normal way and say take control when things were not normal – like if food went on the floor, I would ask my daughter to pick it up, and if she broke the plate, she would pay for it. At Sarah’s 21st, she did not want to see anyone, and I was upset – I was told to go ahead and arrange a celebration and not protect Sarah – so allowing her to be exposed to life.

It’s difficult when your child is sick and does not want your help as caregiver. I learnt to lower my expectations about recovery, and once I did this, I felt better – I had thought Sarah would be ready to go abroad in a few months! Also I learnt to accept my child is not perfect and to accept her as she is; she has had to accept this too. Anorexia is not a glamorous illness.

Sarah is not recovered yet but has learnt to cope. She has completed a dancing course which was very brave because she does not like criticism or failing.

Now she is more into stopping herself doing things, and self-loathing, rather than not eating. It would be helpful for girls like Sarah, who are not chronic, to have a day refresher course every year as ongoing therapy. Just because you have the same illness does not mean you will get on with each other but Sarah has one friend who had anorexia and neither has relapsed and they help each other – they meet once a month and they encourage each other. They understand each other and have done well. No competition. Mutual care. This is good.

My take home message is I could not have supported my child without caregiver training. Sarah would have come off the rails without it.

Postscript: Sarah and her parents are participating in ongoing research with the eating disorder research team based at the King’s College Institute of Psychiatry in south London. The team works to find out more about the causes of anorexia nervosa, bulimia nervosa and other eating disorders, and to develop new and better treatments and ways of supporting carers. Read more about this work in A Collaborative Approach to Eating Disorders

Breaking the Silence – Emily turns to verse

Tools to aid and maintain recovery come in many shapes and forms. Whatever works is good.

Almost always, it is creative. For some, like me, the written word is our sword, for others it is music, singing, painting, jewelry making, the list goes on and is of necessity never-ending.

For Emily, it is poetry. This form of creative expression helps her reach out to and connect with others.

“Whether my poems serve to be an inspiration to others or are just a way of healing my own soul makes the experience of writing the poem all the more enriching,” Emily says. In honor of NEDA 2011, Emily has taken the theme “It’s time to talk about it” and her poetic talents have created a gem.

Emily, age 19, describes this latest work:

Real Monsters depicts that point in my eating disorder where I knew I was a terrible danger to myself, and as much as I feared the thought of eating again, gaining weight, and beginning the recovery process, there was a voice within me that was desperately wishing for an end to the vicious cycle.

“There was a part of me that was dying to break the silence, to get help, to find relief from my own deadly devices, but I couldn’t speak up for myself. I was not strong enough to surrender my eating disorder and lay the agonizing journey to recovery on my own conscious. I did not want to initiate it.

“The real me wanted to let go, but the ED had completely silenced my own voice, and IT wanted to hang on. I needed someone else to break my silence. I needed someone else to talk about IT.

“Thankfully, I found that savior in my mom, but I know not all eating disorder victims are so fortunate. So, I wrote this poem, hoping it will encourage awareness of eating disorders.

“I am encouraging people to talk about IT. I am telling my audience that you have to talk about it. We have to be that strong, heroic, life-saving voice for those who have lost their own and cannot get it back.”

Real Monsters encapsulates what it is like, to have ‘ED’ in your head. As Emily says so eloquently, we must talk, we must act, we must believe that there is hope of recovery at every age.

‘Mom, I want to start eating healthy’

September 25th, 2011

Eating Disorders are elusive and sneaky. Clues of their presence can be difficult to pick up on. When thirteen-year-old Emily said: “I want to start eating healthy”, her mother was pleased. You would not expect those six words to spell ‘trouble’. But trouble was brewing – an Eating Disorder (ED) was starting to weave a tangled web in Emily’s life.

Emily’s mother, Denise, shared her family’s experience for the textbook,  A Collaborative Approach to Eating Disorders. I met Denise at the 2009 and 2010 NEDAConferences. I look forward to catching up with her again, this time at the F.E.A.S.T. Symposium. Denise is devoted to raising awareness of eating disorders. Her story explains why:

“Our story began in the summer of 2005 shortly after Emily’s thirteenth birthday. It was a hot July afternoon, we were making lunch when Emily said: ‘Mom, I want to start eating healthy.’

Emily began cutting down on snacks between meals and at bedtime. ED then convinced Emily to exercise all the time, riding her bike around the driveway, then strapping on a pair of roller blades and doing more laps around the driveway, jumping on the trampoline, doing laps in the pool, running up and down the stairs – anything that would burn calories.

These were both red flags to me but I knew nothing about ED – I only knew this was not my Emily. I began to put time limits on all the laps and exercise.  We had seen our family doctor in mid August after Emily had a fall and hurt her elbow. That’s when we discussed nutrition and the importance of it and how dieting at her age could trigger an ED.  Her reply on the way home to me was: ‘Mom, I’m not stupid; it won’t happen to me.’

Emily had not lost any weight at this point but when we went back two weeks later for a re-check on her elbow, she had grown one inch and lost five to six lbs.  I wish our family doctor had recognised this (1) weight loss, (2) the worry about eating healthy and (3) the compulsive need for exercise – as big red flags for an eating disorder. Then he would have suggested to make an appointment with the Adolescent Paediatrician who specialized in eating disorders instead of us trying some counselling first.

In hindsight it was a HUGE mistake. The therapist began to put the focus on weight and numbers by weighing Emily weekly, letting her see the weight. This started the numbers competition with ED. Emily strove to see how much weight she could lose by each new appointment.  We started the counselling in September. By October things were getting worse; Emily was losing more weight.

I began to bring Emily home from school to eat lunch with me as she was in a small Catholic school just a block from home and the school was willing to help and accommodate this for us.

I was making sure Emily was eating breakfast, lunch and dinner but was not able to get her to eat snacks in between and with the amount of weight loss this was not enough food to maintain a weight, let alone gain any back. I suspect at this point also Emily was doing some purging of meals, mainly dinner. By mid November the fear of food was setting in and that’s when I called our family doctor who referred us to an eating disorder adolescent paediatrician.
In December 2005 we saw the paediatrician; by this time Emily had been developing an eating disorder for four to five months and was spiralling downhill fast. She had lost 23.5lbs and had a low heart rate in 50s and she was probably just days away from needing inpatient treatment.

At this first appointment I heard that ‘Food is Medicine’ and learnt about Family-Based Treatment, the Maudsley Approach. Within the next week, at home, we began home re feeding Emily back to health and life. I went into this pretty naïve, not knowing about the effects that starvation and malnutrition had on the human brain, but I was about to learn real quick.

The next year was an intense emotional roller coaster ride with many twists and turns, ups and downs with the feeling it would never end.  ED turned our world and family inside out and upside down. It was the most traumatic, challenging time for our entire family.

Six weeks after re feeding began my husband fell and had a serious head injury with brain bleed that required four days in intensive care and then complete bed rest at home for a month. This was a very difficult time for me as I was now dealing with two injured brains and trying to help heal both, plus care for my other two daughters, aged fifteen and twelve.  This was also around the time that I found and read the book by Laura Collins, Eating with your Anorexic and the Around the Dinner Table online parent forum that was a great tool for gaining knowledge, understanding and learning about eating disorders.

I no longer felt so lost and alone. I found the information I needed from parents sharing their struggles and battles with their child’s eating disorder. It was extremely helpful in these darkest days. Our next prayer was answered in April when we heard of and began seeing our Maudsley therapist. She was truly a blessing and our saving grace. She guided and supported us through these ensuing difficult months. Our therapist’s dedication, understanding and knowledge of eating disorders, along with her parent coaching, was instrumental in our daughter’s recovery process.

We started Emily on anxiety medication and she had been gaining 1-2 lbs per week. After six months of re feeding she was approaching target weight range. But her eating disorder began fighting back with extreme and resistant behaviours such as trying to get out of the car while driving, trying to grab the steering wheel while driving, climbing out of second storey windows threatening to jump, running and hiding in woods to avoid eating for hours. Going to school, doing homework and seeing our FBT therapist was the only leverage I had that kept her eating and became the means to get us through this difficult period. This was our first year with ED. One bite at a time, separating Emily from ED, working with a team of providers, having everyone on the same page including all family members, teachers and coaches, remaining calm, being firm, consistent, vigilant, standing up and showing no fear to ED. Above all, ensuring full nutrition every day.

During the next six to nine months we experienced more intense resistance with purging and more extreme, bizarre and suicidal behaviours. We decided to add and change psychiatrist, begin trials and combinations of meds, as well as adding more weight. Finally after almost two years of battling ED, we began to see our daughter Emily coming back to us.

This has been a long process and journey. There are no short cuts; the only way out is through. It does get better; it is very life saving and worth all the efforts to get our children back. It requires time, a halo of patience, more time with plenty of persistence and perseverance along with FULL nutrition every day until full weight restoration is achieved, for the mind, body and spirit to begin the healing process. I believe that the Family-Based Treatment Maudsley Method saved our daughter’s life and many years of her and our family being tortured and held hostage by the eating disorder.

Today, Emily is nineteen years old and in recovery. She is in her second year of college working towards an English Major. She has developed an interest in Women’s Studies and would like to advocate and use her experience with ED to help support and inspire others.”

Tags: 

Beating Anorexia – a marathon for both parent and child

September 18th, 2011

A case for more support for families, more education about eating disorders

Imagine running a marathon (a long-distance running race, strictly one of 26 miles and 385 yards/42.195 km) without time for training or preparation. Imagine you must do this, you are thrust without warning into this situation, to save a life. Your child’s life.

Such is the challenge parents face when their child develops Anorexia Nervosa. The child must run a marathon too – in their mind, the hardest thing they will ever do. In fact, one way or another, the whole family gets caught up in a race for survival, a race to beat ‘Ed’:

No one knows how hard it is for a mother to see her child starving to death.  The most natural and first thing a mother does for her child is to feed it and care for it.  When anorexia nervosa strikes it takes your most basic instincts and throws them away.  It turns your child into a monster who is foul, who is angry, who rages, but is also capable of being the most engaging and accepting person with the professionals.  Living with this illness day in and day out is the most stressful thing in the world.  Worse than drug or alcohol addiction, it is irrational, illogical and fatal.

No one sees your role as that of a carer; they see you as an overprotective, ignorant, illogical parent. They don’t realise that before the diagnosis that you have lived with the gradual deterioration, the gradual restriction of foods and the gradual realisation that this illness has infiltrated not only your child but each member of your family.  It affects all of the family and often the extended family. Frustration at being unable to make things better, to cure, to love enough to make the illness go away, goes hand in hand with beating yourself up, arguing with the illness and the sufferer and responding to emotional extremes. Without eating disorder support group BEAT I would never have survived this illness that my daughter has suffered now for more than three years…   – “S” (single parent carer)

“Having anorexia … is like running a marathon and, as soon as you stop, being told you have to run another one, right now.” Claire, age 15 (sufferer)

Eight months ago, Sarah and John were enjoying a full and busy life with their four young children in a small village in England.

John worked full-time. Sarah worked four days a week, part time, at local primary schools. She played hockey and tennis, and provided a taxi service for the children to their many sporting and social activities. The family enjoyed regular barbecues with friends.

Then eldest child, Claire, 14, developed an aggressive and intense form of anorexia nervosa.

When told this psychiatric illness was potentially fatal, shocked parents Sarah and John were ready to do anything. They would have found the money – even at ₤750 a day — if Claire required admission to a private hospital but they were told the best recovery option would be early intervention with family-based treatment through the National Health Service.

The parents’ love and care, 24 hours a day, with guidance from the health professionals, would be the best hope to beat this illness.

Sarah ceased her out of home activities to take on the new role of carer to Claire.

But Sarah had to contend with much more than this. First, there was guilt.

“I felt very guilty about not noticing the signs of the illness developing, but when you do notice it, you haven’t time to feel guilty, you are too busy fighting the illness,” Sarah said.

“I did not know anything about eating disorders; I just thought Claire was being was picky with food.

“As soon as she was diagnosed I gave up working to care for her and my social life stopped too. John was the main breadwinner so we made the decision he would keep his job.

“We tried to keep life fairly normal for our three other children but nobody could come to our house.”

Direct family members – John’s parents lived in the same village – were supportive, but Claire’s illness was so controlling, her anxiety so extreme, no one could visit.

“Some close friends saw my distress and one especially, through school holidays, would take the younger children on outings,” Sarah said.

“As a parent-carer it’s easy to lose confidence in yourself. You can become very blinkered.

“Anorexia is a powerful illness. The first stage of recovery was weight restoration and we could not miss a meal because food was medicine for Claire’s mind and body. Each meal would take three or four hours. Yes, each meal.”

Constant care was essential.

“Every hour is spent trying to get the person to eat,” Sarah said.

“You have to cope with the anxiety before the meal, the eating of the meal and the guilt that follows. Plate throwing has been common.

“Then you have 30 minutes before the process starts again, for the next meal.”

Claire missed about six months of school due to her illness, and now that she is almost at a healthy weight, is easing back into school with part time classes. Sarah goes to school and sits with her while she eats her snack and returns again for lunch. This care will continue until Claire has recovered sufficiently to eat without supervision.

She still needs to hold one of her parents’ hands to eat and cannot eat in public. The family cannot go to a restaurant, as her anxiety is too great.

“Separation anxiety has been the worst aspect of the illness,” Sarah said. “For months, Claire would not let me out of her sight, even when I went to the bathroom. She was my shadow. One time I was taking my youngest daughter to dancing, and Claire clung to the mirror and smashed the window of our car; this was scary, endangering our other children.”

At the time, Claire was engulfed by her anorexia. “It permeates the mind so cleverly,” Sarah said.

Besides anorexia, Claire suffers depression and obsessive compulsive disorder.

“She has many phobias,” Sarah said. One is chocolate. Sarah cannot imagine life without chocolate.  Chocolate is at parties, chocolate is about socializing and savoring life, but Claire’s illness does not allow her to see this.

Sarah tries to separate the aggressive symptoms of the illness from the sweet daughter whom she knows is within. “I have not felt resentful, having to stop my sport and work – although it is hard when anger, both physical and verbal abuse, is hurled at you, along with the plate, and you see your little children suffer, and you have to try and keep check of your emotions,” Sarah said.

“The illness is cruelest to those closest to the sufferer at a time when they need you most.”

Financially, the family is “comfortable”, but life has been harder. John received an offer of a better job, but because he would have been away from home more, he declined it. While the illness has not impacted greatly financially on the family of six, it has caused havoc in other ways.

Family holidays have not been possible, and social outings curtailed.

“John and I have been together for 25 years and are good friends,” Sarah said, “but Claire’s anorexia has tested our marriage.

“It isolates and splits and does its best to separate. It plays one person off against the other. It causes trauma and destroys families. As soon as I finish with Claire, I have no time or energy for my three younger children. John has noticed this. I feel very guilty trying to balance everyone’s needs and at times, I have had to walk away.

“Mothers, being more emotional and with a maternal link, probably have a little more patience. Husbands don’t realize this illness is here for a long time – they think maybe for a few weeks or a month.

“Most families have to deal with a chronic illness at some time. Some children are born with one. When it appears suddenly, as Claire’s did, it brings many stresses and strains. Siblings don’t understand what is happening and wonder why their older sister requires all our attention.”

As part of the family-based treatment, Sarah and John take Claire for weekly sessions with their eating disorder specialist and nurse.

“Some people go to university for years and study this illness that we have had thrust on us. I sometimes wonder if I have enough strength for the next stage, the psychological stage of recovery,” Sarah said.

Sarah has reason to be hopeful: in line with the first signs of spring, the family is rejoicing in seeing flashes of Claire’s personality re-emerging.  She is laughing for the first time in months and playing the piano with her sisters.

“The flowers are out, our spirits are lifting after a long winter and the timing is great,” Sarah said.

Although she has absolutely no cause to feel guilt or blame about an illness that latest research reveals has a largely genetic and neurobiological base, Sarah wishes she had been better prepared to help her daughter.

“A day or half day respite would have made my role as carer easier,” Sarah said. “The first three or four months were totally consumed in fighting the illness. It had a huge emotional hold. I was exhausted.

“I realize I was fuelling it because I was unaware of its manipulative nature. I did not have time to read and study it, and the clinic was only for 90 minutes a week.”

Situations often required an immediate response and a 24 hour helpline would have been useful, Sarah said.

An example was when Claire would say: “I am fat.” Sarah would respond, reassuringly: “You are not fat.”

“Claire would make a statement and I would say the opposite,” Sarah said. When Claire said ‘That’s loads on my plate’, I would say ‘No, it is not’. This would lead to heated discussions about size, amounts and portions. The illness would trick me into re-acting. John was more able to cut himself off from such conversations. He was less inclined to be drawn into the emotional pull of the illness.

“I now say to Claire: ‘You know how I feel, and this is not for discussion.’ I am quite firm. I know more about the illness.

“If it is trying to manipulate me I say: ‘We will discuss this another time. It is food time now. We will focus on eating.’

“The illness wants us to lose our temper so we must strive to stay compassionate and level-headed at all times.

“I know now that if I say ‘I’m going out’, and Claire says ‘don’t go’, I must ignore her and go. Not to go would be to feed her illness. John encourages me, and says: ‘Just go’. We must challenge the illness constantly to get our Claire back.”

The social impact and the trauma impact on this close, loving family has been immense – affecting relationships between Claire and her siblings, parents and children, husband and wife, and extended family.

“Relationships are paralysed in the early stages of recovery, because parents are focused on the illness,” Sarah said. “We have been the horrible food managers, and the siblings have had the role of being Claire’s friends – playing the piano and singing, helping in their own way, making a mum’s day card; the way, as brothers and sisters, as children, they just do. They want their sister back.

“It is hard watching Claire struggle against her illness – struggling to ignore it and trust her Mum and Dad.”

In a new stand, John and Sarah have resolved to live as a family, not live the illness.

They have booked their first holiday since Claire developed anorexia. The accommodation will be self-catering so Sarah can do all the meals.

And Sarah looks forward to resuming participation in sport.

A former marathon runner, she is thinking of running another one in October, “probably for a charity raising funds for anorexia research”.

Her inspiration is Claire, who describes anorexia as being “like running a marathon and, as soon as you stop, being told you have to run another one, right now”.

“Anorexia is like a marathon every day and it won’t go away,” she said.

In a great show of courage and faith, mother and daughter are uniting in facing their respective marathon challenges – one to beat the illness, the other to raise awareness of it. “We will do this together,” Sarah said. “Claire may ride the bike while I run. We will tackle it together.”

Cracking the AN mystery by 2020

September 6th, 2011

The mystery code surrounding Anorexia Nervosa will be ‘cracked’ by 2020 if Sydney-based child and adolescent neuropsychiatrist, Professor Kenneth Nunn, has his way.  We would love it to be sooner, but let’s put that date on our calendar. It will be a time to party, big time.

Prof. Nunn revealed his courageous goal in his address to the NEDC national workshop in Sydney. Displaying a compassionate nature and sense of humour – essential in coping with eating disorders – he helped unravel a very complicated subject with an entertaining and informative explanation.

As someone who lived with Anorexia (AN) and its co-morbid add-ons (Bulimia, depression) for more than four decades, I vouch for Prof. Nunn’s opening statement that the illness is not easy to understand. A person with AN is sensitive by nature, yet can be totally unaware of the impact their illness is having on those they love. A person with AN can be deeply anxious but unable to understand that they are ill, very ill. Even if they can appreciate the danger, they can remain uninfluenced by that danger.

Despite being definitely no fun, and downright deadly in the most serious of cases, AN continues to be called by many people ‘an illness of choice’, ‘a stubborn fad’. The media has been blamed for causing the illness. Parents have been blamed. The person with the illness has been blamed. Wrong, wrong, wrong.  The cause, according to Prof. Nunn, and a growing research chorus, lies inside in the brain.

This stance could be said to be a big revelation from someone like Prof. Nunn, who trained in psychiatry in the days when families ‘caught schizophrenia’ and ‘caught autism’. Thank goodness forward-thinking researchers were willing to look outside the square and prove those damaging autism and schizophrenia theories wrong. Thank goodness vulnerability was shown to go beyond ‘troubled families and personal trauma’, beyond nurturing and environmental factors.

Prof. Nunn is confident his AN theories, all going to plan, will put anorexia in the same category as autism and schizophrenia, and small pox, in ‘only’ nine years from now. Yay!

I like how Prof. Nunn donned his detective hat as a researcher and went looking for clues in the brain. One ‘clue’ was a brain neurotransmitter called ‘Noradrenaline – a humble molecule closely related to Adrenalin’. Our whole anxiety system is fueled by adrenalin. So is the ability to concentrate and perceive threat.

As a person who experienced anxiety before developing AN, I was interested to learn that when we develop AN, noradrenaline is switched on sooner and acts like a turbo-charged threat detector. This leads to us feeling more anxious and sensitive, and we discover that we feel better (less anxious) when starved of protein.  Conversely, people with AN feel more agitated and anxious when re-fed. Eating food leads to feelings of guilt. This, Prof. Nunn explained, is because blood supply to the brain has been altered, and the brain adapts to change more slowly than others parts of the body.

Noradrenaline is just one of Prof. Nunn’s theories. The other two are the Homuncular hypothesis of body image misrepresentation, and the Insula hypothesis.  Understanding all this was getting a bit beyond my ‘lived-with-AN’ brain by this time, but Prof. Nunn helpfully explains on the NEDC website, how they come together:

Back in 1998 at the London Eating Disorder Conference, Prof. Nunn put forward the insula hypothesis of anorexia nervosa. The insula is a part of the brain that until recently has received little interest from researchers and clinicians. Since then he has been collaborating with researchers in London and Oslo on brain imaging studies to test this hypothesis. There is now quite a lot of interest in this area of the brain in eating disorders. In the early part of this decade Prof. Nunn worked with scientist Dr Ruth Urwin, at the Children’s Hospital at Westmead, Sydney, to investigate possible genetic contributions to restrictive eating disorders. Between 2002 and 2005, they published a number of papers implicating the genetic regulation of  noradrenaline in anorexia nervosa. Last year Prof. Nunn presented a further part of the jigsaw in a workshop of neuroscientists in London on the role of bodily representation in the brain under the title of the Homuncular hypothesis of body image misrepresentation. These three different theories have now been integrated into a single major causal theory of anorexia. More recently, Prof. Nunn has been working with colleagues at the Children’s Hospital Westmead under leadership of Dr Sloane Madden. Focus of his current research, with Stephanie Helfer, is studying brain mechanisms underlying emotional and behavioural dysregulation and how they are connected.

Ascertaining the cause of AN will be a major, major breakthrough. Translating the knowledge of the cause into improved prevention and treatment practice will be another major breakthrough. Three cheers for dedicated researchers like Prof. Nunn who looking beyond what ‘has been’ and won’t give up.

Much of the material in Prof. Nunn’s presentation is available in a book he published with Bryan Lask and Tanya Hanstock: Who’s Who of the Brain Jessica Kingsley Publishers:  London.  Another book, exploring the three theories, is due out soon.

Research in Everyday Clinical Practice

How do practitioners know they are good at what they do?

Among the many interesting presentations at the ANZAED 2011 Conference in Sydney,  one made a special lot of sense to me. Titled ‘Research in Everyday Clinical Practice – Why It’s Important and How to Do It’, the presenters were *Dr Anthea Fursland, of the Centre for Clinical Interventions, Department of Health, Western Australia, and Assoc. Prof. Susan Byrne, School of Psychology, M304, University of Western Australia. 

Setting the Scene: Most clinicians aim to offer high quality therapy with their patients and are convinced their therapy is effective. As a result they tend to continue offering the interventions they believe work best. But are clinicians really good judges of how well their interventions are working? And are they able to tell whether their interventions work better for some patients than for others? Not all clinicians work in settings with opportunities for data collection and the establishment of a large database, so what can they do about it?

The presenters put forward a strong case for their belief that good clinical practice involves being curious about one’s therapeutic successes and failures, and that it is incumbent upon responsible clinicians to gather objective evidence for the effectiveness of their interventions. They proceeded to outline a rationale for conducting research (with a small ‘r’) in everyday clinical practice, and provided ideas on how to go about this.

“I thought I was a good practitioner for 25 years, but then I realised I had no way of telling if this were so,” Dr Fursland said. “I realised I would need to evaluate my practice and service to see if my treatments were working, and to see if the treatments worked better for some patients than others.”

Good reasons for clinicians to research their own practice:

* Ethically – a duty to prove best practice treatment.

* Patients deserve to know how likely they are to succeed in the treatment.

* Knowing how a patient is doing, and giving them feedback, is likely to improve their  (your) outcomes. (For example, showing the patient a graph plotted each six weeks, can show that indeed, they are making progress even if they don’t feel like they are, right then).

Reasons not to research a clinical practice:

* Extra work – administration, scoring, interpreting results and preparing reports.

* Feeling that quantitive measures fail to capture the ‘essence’ of psychotherapeutic change.

* Avoidance and denial – not wanting to know – for instance, the results may not be crash hot, and the clinicians may fear getting disheartened.

But, as Dr Fursland said, none of these ‘reasons’ are a good reason not to carry out research in everyday clinical practice. She proceeded to roll out the myths, and quashed each one:

* Myth One – Patients are unwilling to complete questionnaires. Not true – patients can become curious and interested in their own outcome. (Yep, put me in that basket).

* Myth Two – Data analysis will be complicated. Not true – observational measures can be as simple as adding up a score before and after treatment – for example, plotting the number of binges and purges each five weeks; recording weight and height for a BMI reading; noting attendance; and compliance with homework such as self-monitoring. All simple, practical things that don’t take long to do but can mean a lot. “It is criminal that any program doesn’t know how well it is doing,” Dr Fursland said. Agreed! She said a patient’s score could be used in several ways – it could be compared with general population and/or clinical norms; or it could be compared with the average for the clinician’s own caseload – and if not doing so well, provide opportunity to ask ‘why?’

* Myth Three – Asking people to complete qualitative measurers interferes with the therapeutic  alliance. Not true, in the presenters’ personal experience. They have found that giving accurate feedback can be meaningful and add to the therapeutic alliances.

Ethical considerations, required for specific research projects, were not an obstacle, either, Dr Fursland said. “Approval from ethics committees is not required to monitor treatment in our clinical setting – we (don’t need such approval to) take blood samples.”

Everything is explained to the patients before the recording of measures begins, and the participation rate is very encouraging. The patients feel more ‘part of’ the treatment. I can relate to this. I think that if such ‘clinician-patient’ collaboration had been offered on my recovery journey, it would have helped me see my illness for what it was – an illness. I’m sure the feedback and discussion would have empowered me at least a little and encouraged me to push on. I would have felt that the clinician really must be listening, and must really care.

Drs Fursland and Byrne suggested several measures, including some downloadable from the Internet, that clinicians can use to ‘get started’:
         Eating Disorders Examination Questionnaire; EDE-Q        (Fairburn & Beglin, 1992)*

         Depression, Anxiety & Stress Scale; DASS                     (Lovibond  & Lovibond, 1990)

         Rosenberg Self-Esteem Scale; RSE                                (Rosenberg, 1964)

         Clinical Impairment Assessment; CIA                              (Bohn & Fairburn, 2009)*

* Found in Fairburn’s 2009 book Cognitive behaviour therapy and eating disorders

Simply, there is no excuse for delay.

Dr Fursland is the ANZAED president for 2011-2012.


Family-Based Treatment – Suits Most But Not All

“ED” will be cornered in Sydney this week with two events: a National Workshop organized by the National Eating Disorders Collaboration, and the Australian and New Zealand Academy of Eating Disorders (ANZAED) ninth annual conference.

As a co-chair of the Consumer and Carer Reference Group on the NEDC steering committee I look forward to meeting families and individuals who are coming along to learn and share their experiences to help others. At the ANZAED conference on August 26thI will have three minutes on stage to ‘tell the world’ about my first ever poster. The title is ‘Evidence from Experience – The Untapped Resource’. Stay tuned for more!

Treatment is sure to be major topic at both conferences.

As a ‘consumer’ (I dislike the use of this word in this context – but that’s another story) who struggled for decades with eating disorders, and who became estranged from parents and sibling along the way, I am passionate about Family-Based Treatment (FBT).  My reasons are two-fold: FBT, also known as the Maudsley Approach, is internationally recognized as the best evidence-based treatment available for early intervention of anorexia in children and adolescents; and it involves all members of the family in the recovery process.

However, while FBT has a high success rate, it is not suitable for all families. It is important that these families do not feel ‘a failure’ when FBT does not work for them, and it is equally important that these families are assisted in finding a treatment that does work for them. Notice that I am talking about the entire family. This is because when Anorexia Nervosa develops in a child’s brain, the repercussions affect not only the child but each member of their family. This illness will not ‘just go away’. It needs to be challenged – as with cancer, the sooner the better – and a united, collaborative front is the best way to ensure success.

There is no quick solution to an eating disorder, and understandably parents become confused, frustrated and angry when FBT does not work for them. The voices of these parents must be heard, while remembering and respecting that FBT, for the moment at least, is the best solution for the most families. It reminds me of that old saying: ‘Don’t throw the baby out with the bathwater’.

In preparing for the two national conferences this week, I have invited two mothers to discuss the topic:  ‘Family-Based Treatment – suits most but not all’. How do you respond to families whose experience with FBT has not been successful, and want their voice to be heard, sometimes to the point of criticising FBT, asserting that evidence for its application is ‘weak’ and expressing fear that this form of treatment will attract the biggest share of available health care resources?

Jane Cawley who, with Harriet Brown, is co-chair of Maudsley Parents, writes:

I run into this line of thinking quite a bit – and consider critiques a natural and positive thing: a backlash is a sign that FBT is a great enough influence to be noticed!

I find these critiques come from basic misunderstandings of FBT and real concerns about resource allocation:

The “weak evidence” angle is a (somewhat smug) new catch-phrase that lacks context: compared to what? There isn’t anything stronger, and there isn’t a heck of a lot known at all. One can call almost all data in psychiatry “weak” if one’s goal is to be negative. This nihilistic attitude about FBT almost invariably comes from those who: don’t understand it, or have a vested interest in other approaches with even less data. The weak evidence argument needs to be responded to thus: “You’re right: we need more research. Meanwhile we will have to go with the tools we have that have even weak evidence over those with less, or none – when possible.”

The “it didn’t work for me” argument is understandable. Imagine the despair of a family being told “this is the Gold Standard” and it still not working. This argument is less about logic and data than it is a plea for compassion and understanding, and I think we should give it. My answer in a debate on this is: “It must be so hard to hear people talk of the success of FBT when it didn’t work for you. I want to hear more about that and perhaps we can help you explore some of the many other options – all families want their loved ones to recover.” If pressed, I add this: “Infections often require antibiotic treatment. No one formulation will work in every situation. While we might start with the medicine most likely in that situation to be adequate we must always have other alternatives at hand for the minority with different profiles. The medicine may fail, but the patient has not.”

The “don’t prescribe this because then other things won’t be available” line is a sad truth in most health systems and family finances. The NHS, for example, seems to think that “evidence-based” is an exclusionary concept and not a way to prioritize and stage interventions. Yet this is a failure of the health system that we need to change, not an excuse for rejecting evidence-based approaches first. Of course there must be alternatives and clinical judgement, but without a way to distinguish and stage by the data we have we become guardians of a status quo that is most likely to harm the greatest number of patients and their families. My answer to this is generally along the lines of “I understand your concern that FBT will be the only option and will leave many families without the resources they need. That has been your experience and you know well the perils of failing to offer alternatives. We agree on this and must work together to make sure our health system does not think of this as a zero-sum equation. In fact, by staging interventions based on the evidence we have we may be able to open up more resources because more families will find appropriate care early and move forward.”

I hear the “don’t stick this down my throat” [response to FBT] from parents who fear they can’t do certain things, feel guilty for having failed to do certain things, and those for whom FBT genuinely was the wrong option. I hear it from clinicians who feel their intentions and long history of hard work are being disregarded or criticized. There is an impression out there that treatment advice (and lack of availability of other options) based on research is too mechanical, too patronizing, too bureaucratic. These are all understandable for new, difficult ideas. But really, those out there offering FBT training and information are not the ones sending the message “you must do this.”

The message has been, as far as I can see, that this is an opportunity – not a mandate. A glimmer of hope, not a rejection of all else. People may feel dictated to but I think that is a defensiveness inherent in being questioned, not some sort of bullying on the part of proponents. I have never heard a FBT clinician or advocate say that there is no other alternative or that FBT is suitable for all – that is coming from those who feel challenged by it and mostly from those with personal reasons to do so. I believe in time the ideas will be less threatening and the resistance will decrease.

There: I’ve gone on too long. It’s just that I engage in this argument constantly and although I find it wearying I also see that the ice is melting and the paradigm shifts inherent to grasping FBT are not without distress.

The points of agreement are that alternatives must be available, and that more research is desperately needed. Neither of these points should mean FBT is de-emphasized as a first-line option, or that fairness requires equal footing for all approaches.

Tomorrow, Laura Collins shares her view.

Why Mental Health Reform Can’t Wait

For several days I have been consumed ‘in the past’. Sometimes events occur that we can’t ignore.My memoir A Girl Called Tim – Escape from an Eating Disorder Hell describes how family secrets were a major hurdle to overcome on my recovery journey. Two years have passed since my mother died and one year has passed since my father died. Tomorrow I will be up at 4am to drive to my hometown of Bairnsdale to catch up with a nephew, who is an Executor of my father’s Will and Testament, and collect small items that he has chosen as keepsakes for myself and my children. I loved the farm that was my world during my childhood but, due to the family secrets, I now pretend it has ‘gone’. I cannot see it again in this lifetime. I have had to shut it out of my present so that I am free to move on with my life.Because my illness occupied many years of my life – from age eleven to fifty-four – it is hard for me to tell what influence it had on my parents in deciding the distribution of their possessions and in denying me any say in anything.  I feel sad that my family of origin did not realise that true meaning in life does not come from material possessions like land.Over the past twenty years I wrote many letters to my family, seeking togetherness, seeking openness, seeking communication and connectedness.My letters were ignored. When I tried a direct approach via phone, a favourite put-down was: ‘June, you are the only one who thinks there is a problem’. Yeah.For reasons I will never fully understand, secrets kept from me and my children have destroyed my family of origin. Split it down the middle. Destroyed it.I feel sad my parents decided that keeping land together was more valuable than keeping family together. I encouraged them to leave their land, if not to their two daughters equally, then to all eight grand children with equal shares. Either approach would have promoted communication and family unity. My suggestions were ignored. The farm went to the eldest grandson, named ‘Tim’.Until I read an email sent by my nephew Executor yesterday, I did not know my mother had left a Will.Just another example of where I have been treated as a ‘Nothing’. Did those making decisions not see me, beyond my illness, I wonder. Did it suit them to see my illness only? I will never know.Doctors, neurosurgeons and psychiatrists have drummed into me, insisted that I walk tall and say over and over: ‘I DESERVE TO BE TREATED WITH RESPECT’. Over and over. A mantra.The doctors warned me that my family of origin was ‘toxic’ and would make me sicker, kill me, unless I stepped away. Tough stuff. Since my parents’ deaths they have warned of ‘control from the grave’.Why have the health professionals had to do this? Because  actions by my family of origin robbed my self-respect. Their actions alienated and rejected me. They kept secrets. Refused to share. Oh, my illness thrived on all of this!I will never understand why I was denied the pleasure of choosing so much as ONE item from my childhood home. My old illness voice is whispering ‘because you did not deserve any thing, that is why’. I tell it to ‘shove it’.For years that voice raged and debilitated me, and obviously confused my parents. Thank God I am sufficiently regained to withstand that voice today. I eat my three meals and three snacks each day without fail – and this week, on my girlfriend Helen’s advice, a little extra dark chocolate!For five years I have been in a gloriously happy place. I have peace in my heart and my soul. I am free of my illness and this is worth more than all the riches in the world!Right now, though, it hurts a little. This surely must be natural. Tomorrow I must journey to a place loaded with ‘triggers’.My wonderful children and friends are forming a loving support network to help me through the day.It is the things that are worthless to others that I have wanted the most.One item is a rag doll – named Alvina after my paternal grandmother who was very loving towards me. The doll was hand-made by my daughter when she was fifteen. She gave the doll to my mother, and would like to give the doll to her daughter, Livvy, born on my mother’s birthday in 2009. I asked for the doll prior to Livvy’s first birthday in 2010 but the Executors refused to release Alvina, stating she was ‘part of Probate’. Ouch, that hurt. It was only a rag doll, after all, and would have made a little girl very happy. I hope to bring Alvina home tomorrow.Another item is my mother’s diaries. My mother and I shared the bond of diary writing. Each Christmas for at least two decades, I gave my mother a diary at Christmas, with the preface inscribed, for the coming year. Shortly before my mother died, I mustered the courage to ask her if I could be caretaker of her diaries – I promised I would take great care of them. She assured me that ‘yes’, I could be the keeper of her diaries.  I have been waiting more than two years for my mother’s wish to be granted. I carry her words in my heart and soul; I hug them tight; God knows, my mother knows and I know. Nobody can take this away from me.There is always a silver lining to every dark cloud. For me this has come in the form of a passion to raise awareness of mental illness at every opportunity. I am a big fan of Family-Based Treatment. I want families to be happy and united. I want to do all I can to help ease their pain and ensure that children don’t become alienated because of their illness. People suffering mental illness deserve to be treated with respect and provided with proper treatment and care. The families and carers likewise need access to information and support. I hope our politicians are listening. My story is one reason why Mental Health Reform Can’t Wait.

 

Work Together to get more Mental Health care for kids

See my letter ‘Work Together’ Melbourne’s Sunday Age today  – we need united voice to increase mental health budget:

Work together

I PRESCRIBE a strong dose of collaboration for the psychiatrists, psychologists and patients who accuse Patrick McGorry of self-interest and criticise the federal government’s mental health reforms. As someone who developed a mental illness at age 11 in the 1960s, I applaud the call for early intervention.

McGorry’s untiring work in establishing headspace centres and early psychosis prevention and intervention centres is a step in the right direction. He has helped lift the stigma from mental illness. He has worked wonders in placing mental health on the budget agenda. Learn from him. Be inspired by him.

The link to the article which inspired my letter to the editor: McGorry Accused of Conflict of InterestThe Age, August 7th.

Psychiatry needs a dose of Collaboration

I prescribe a strong dose of collaboration for the Aussie ‘psychiatrists, psychologists and patients’ groups’ who accuse Professor Patrick McGorry of self-interest and criticise the federal government’s mental health reforms (Jill Stark’s article: “McGorry accused of conflict of interest”, 7/8). Let’s not knock our messenger.  As someone who developed a mental illness at age 11, in the 1960s, I applaud the call for early intervention. Intervention needs to start with mothers who are considered ‘at risk’ and there are moves afoot to make this happen. But meanwhile, Prof. McGorry’s untiring work in establishing headspace centres and early psychosis prevention and intervention centres is a step in the right direction. Prof. McGorry has helped lift the stigma from mental illness. He has worked wonders, particularly highlighted during his term as Australian of the Year in 2010, in placing mental health on the budget agenda. Learn from him. Be inspired by him. I am. He has helped me feel that I am an okay person and I feel sure he has helped many other Australians with mental illness feel the same way.

Sure, we know that more people suffer from eating disorders than suffer from schizophrenia but both illnesses are hellish. We all deserve help and we must work together and raise our voices in unison to get it.

As for eating disorders, Prof. McGorry is already on the case. He is chair of the National Eating Disorders Collaboration and will address the national workshop coming up in Sydney on August 24th. He recognises that eating disorders and other areas need support and is doing what he can to help. Earlier this year, he shared a precious hour with me, to discuss the need for more focus on eating disorders.  Psychiatry needs to get its head around the fact that collaboration, rather than division, is the best way to claim more of the budget pie and help Australians of all ages.

Mothers with Eating Disorders need support

August 5th, 2011

Mothers living with an eating disorder while raising young children face a multitude of challenges, one of which is meal-time.

I received this e-mail query from ‘B’:

Do you know of any strategies that work with the Maudsley tenet of food being non-negotiable but translate this into an adult setting where giving over responsibility for the food preparation is not an option?  I’m struggling with knowing I need to eat, but also being responsible for having to feed everyone in the family, including myself – and the ‘including myself’ often becomes too challenging, so I give up. I talk myself out it! My husband is very supportive, but he also works very long hours, so it does not seem reasonable to expect him to come home at then cook for me – like it or not, being a mother, this is my job :-)

I identify with ‘B’s feelings. I experienced the same tussle of thoughts throughout my twenties, thirties and forties.

I often yearned to be in confined and restricted places like hospital or anywhere, where meals would be provided at regular times. In such an environment I could eat the meals, as someone else would have prepared them, and they would be allocated. Somehow, this was acceptable as I was not in control. I could eat the meals and not feel overridden with guilt. So for the few days I was in hospital after the birth of each child, or after an operation, I thought this must be what it is like to be NORMAL and I would fastidiously plan to continue eating three meals a day when I returned home.

Of course, when I returned home, without support, my eating disorder behaviours screamed and shouted, sabotaged the vulnerable me, and took over.

Like other mothers, at home in my own kitchen, I put the needs of others first.  In doing so, I fed my illness. I needed someone strong in my kitchen, taking charge, both in preparation and during the eating of the meals. I needed someone to take on my illness until I was strong enough (had regained sufficient of my identity) to take it on myself.

Certainly my recovery from my ED was much harder and was greatly prolonged for this reason. Recovery from an eating disorder requires full attention and support. It is hard for mothers to give their full attention to the recovery challenge.

For decades I created nourishing meals for husband and children, while they tucked into their hearty meal, I would load my plate with green and yellow vegetables (so that it seemed a lot). Or if I had been upset and binged, I would pretend I had eaten already, and eat nothing at all.

Like ‘B’ I needed someone to take the control until I was recovered sufficiently to do so myself.

Strategies in the back of A Girl Called Tim evolved from my experience.

It is hard it is to ignore the torment of our illness  — it will always try to convince us to put ourselves last. But we must put ourselves first. Regain our identity, gain freedom from our eating disorder, and then the world is ‘our oyster’.

I suggested the following strategy to ‘B’:

Put a large calendar on your kitchen wall, and write down the meal times, and what you will eat for each meal. Show this menu to your husband the night before, and when he comes home the next day, get him to check that you have eaten at the correct time, and have eaten everything on the menu. After eating each item on the menu, use a highlighter to give yourself a tick for success. You must be honest with yourself (as distinct from your illness). You may require a recovery guide to assist until you have regained sufficient ‘self’ to be able to ignore the horrid illness thoughts.

When your husband comes home:

IF YOU HAVE NOT EATEN EVERYTHING ON THE MENU, then eat it NOW. Even if NOW is 11pm at night. Eat it now. Sit at the table with all the uneaten food in front of you. Eat the lot.

No avoiding your meals, okay? Even if you have binged on 10 packets of Tim Tams. Eat your meals. You will be amazed at how you gradually lose the urge to eat 10 packets of Tim Tams. Why? Because you are not going to punish yourself with starvation any more. You are breaking the ‘feast and famine’ cycle.  Remember, food is our medicine.

Three meals a day are ESSENTIAL to breaking free of the ED prison.

And next morning, the menu continues…even if you have eaten yesterday’s breakfast at 11pm, you start the new day with breakfast at 7am.  DO NOT MISS ONE MEAL OR ONE SNACK.

Can you enter a contract with your husband/partner/parent/best friend that you will not miss one meal, or snack (3 meals, 3 snacks DAILY)?

Every night, set out your meal plan (or do it a week in advance).

Part of the contract is that you must be TOTALLY HONEST.

You must be extremely courageous and ignore the torment of your illness. It is scary.

WITH HELP, YOU CAN DO IT!

Share this message with your loved one.
Top tips from Sarah Ravin:

1.) husband could take family medical leave from his job for a few weeks to jump-start the re-feeding process

2.) relatives, neighbors, and friends could come over to help with some meals

3.) a relative could come stay with the family for a week or two to help with meals, to jump-start the process

4.) the kids could go stay with grandma or another relative for a week or so, to give mom a break and allow her to focus on her recovery

5.) the woman and her husband could plan meals in advance, writing down exact foods and quantities that she will eat (non-negotiable).

6.) regardless of his job, husband can make time to eat breakfast and dinner with her to ensure that she eats what she should.

7.) husband can call her or send text messages at lunchtime and snack times to provide encouragement and keep her accountable

8.) the woman and her husband should find a good therapist who can help them with a FBT approach

* Further reading: See Chapter Sixteen, Couples Therapy for Anorexia Nervosa by Cynthia Bulik, Donald Baucom and Jennifer Kirby in A Collaborative Approach to Eating Disorders.

ANZAED and BUTTERFLY take ED to Canberra

There is a great feeling of growing collaboration and determination in Australia in tackling the enormous issues involved in extending proper care and treatment to children and adults who have an eating disorder.

Researchers, clinicians and eating disorder support organisations have finished with wishing things would get better. They are taking action. They are  ‘walking the talk’.

Australia’s two eminent eating disorder organizations, the Australian and New Zealand Academy of Eating Disorders (ANZAED) and the Butterfly Foundation recently sought and achieved a meeting with Federal Minister for Mental Health, The Hon. Mark Butler, to object against moves to cut the already inadequate maximum of 18 subsidised treatment sessions under the Better Access Scheme to 10.

Mr Butler was receptive to the case put forward and has asked ANZAED to prepare a submission to the Senate Inquiry into the recent Budget changes.  There is a chance that ANZAED may be asked to explain its submission before the inquiry. So it is time to get the artillery ready and gather more facts and figures.

Mr Thornton writes in an email to ANZAED members this week:

“Our submission will relate specifically to the impact of the changes to the Better Access initiative on access to treatment for patients with eating disorders.  I also encourage individual members to put together a submission related to issues of concern to them and their profession.”
The call for better health care provisions sounds promising as Mr Butler has asked to meet again with ANZAED in a few weeks.  He has also asked for data indicating the impact on loss of subsidised treatment sessions on patients and, where possible, the number of patients that would be affected.

Figures so far provided by ANZAED members have clearly indicated that more than 75 per cent of patients with a diagnosis of an eating disorder require more than 12 Better Access sessions. Mr Butler was interested in these sorts of figures and wants to know approximately how many patients this actually represents.
To help compile the case for further meetings with the Minister, and in preparation of the Senate Inquiry, ANZAED’s Chris Thornton is building a profile of the types of people who access treatment under the Better Access Scheme.  ‘Ball park figures’ are needed to convince Mr Butler of the (unintended) impact that would occur on patients with eating disorders under the announced changes to the Better Access program.

If you are involved in providing care for people with eating disorders and are not a member of ANZAED, now would be a great time to join and add your voice to this important access-to-treatment issue.

The higher the ANZAED membership, the higher the impact in pushing for better ED care.  As Chris Thornton says: “It is an important time for clinicians in the sector to come together.” Chris has created a list of questions which he will happily distribute to anyone who can help build the stats on eating disorder treatment. This in turn will help strengthen the presentation to the government.

People with eating disorders and their carers can assist too, by asking their treatment health professional if they are a member of ANZAED and tell them about the opportunity to stand tall and speak up for better treatment and care across Australia.

More information and application forms to join the Australian and New Zealand Academy of Eating Disorders are available from <http://www.anzaed.org.au>

Postscript: The 9th Annual Conference of the Australia and New Zealand Academy for Eating Disorders will be held at Crowne Plaza Hotel, Coogee Beach, Sydney on August 26 and 27. The theme, appropriately, is Health in mind and body. Details: http://www.anzaed.org.au/ Key note addresses: Professor Caroline Meyer, University of Loughborough and Professor Perminder Sachdev, University of NSW.

The Getting of Insight

For nourishing food for thought on what is important in assisting recovery from eating disorders, read Sarah Ravin’s discussion in this great article Insight on Insight and Eating Disorders.

Furthermore to Speaking Up and Saving Families

I wrote this letter in five minutes to ease frustration and hit the Send button. I encourage you to do the same. Thank you to the Herald Sun newspaper, Melbourne, for this coverage:

Erin’s Sock of Hope

This morning I clicked on my Inbox to find this note from Julie O’Toole, of the Kartini Clinic:

I understand you are part of a project to honor the memory of Joan’s daughter Erin Riederer—how can we be a part of this?  At the very least, are there sock pins we can purchase and use for awareness over on this side of the water?

Julie’s letter is very heartening.  To know people wish to participate and support this fledgling and vital project, is inspiring. Hopefully sock pins and maybe socks as well, will be available very soon.  I am passionate about this cause but first, let me explain:

This month of June marks a year since I was in Salzburg, Austria, for the 2010 annual conference of the Academy of Eating Disorders. What I recall most about this conference is not the many wonderful speakers, or the scholarship awards that dear friend and writing colleague Carrie Arnold and I received for helping to raise awareness of eating disorders, or even the beautiful mountainous environment, but a sock.

A common, everyday, cotton, with terry-towelling footing sock. A sock worn by my daughter Amanda, to the gym, back in Melbourne, Australia. Somehow the sock had hitched a ride in my shoulder bag to Salzburg.

Another dear friend and esteemed ED activist, Laura Collins sets the scene:

F.E.A.S.T. is one of a growing coalition of organizations and individuals participating in a developing international project: “Erin’s Sock of Hope.” Led by an Australian author, June Alexander, this project was inspired by a moment of grief and friendship among a group of eating disorder activists in Austria.

A flyer for the project is available.

At the F.E.A.S.T. exhibitor’s table at NEDA’s conference in 2010, a special tri-fold display created by dedicated volunteer, Denise, included pictures of Erin and her art and was surrounded by fuzzy and sparkling socks.

Erin’s mother, Joan Riederer, is a F.E.A.S.T. member and brought Erin’s real sock to the display as did several other members. During the conference many parents wore tiny sock pins as well in honour of the project and in support of Erin’s family.

The sock’s appearance at the National Eating Disorders Association 2010 conference, was very much a ‘stepping out’ occasion. I felt honoured to meet Erin’s mother Joan, whose bravery is truly inspirational. Joan is determined to help Erin’s spirit live on through raising awareness and saving lives. She is fully supportive of the sock developing as a symbol of hope for people who have an eating disorder. Laura asked me to explain the sock’s significance.

More recently the potential of the sock concept to create a universal symbol to raise awareness of eating disorders was taken up by the Patient Care Task Force of the AED. Discussions were held with a marketing expert who agreed the concept held much potential and had best hope of success through cultivation of a groundswell of support.

My dream is to see socks sold to raise funds for research, as well as raise awareness of eating disorders, similar to the pink ribbon which has proven very effective in relation to breast cancer.

I visualise the Sock of Hope being sold around the world for all members of the family. I visualise pins being sold to wear on lapels and scarves.

All we need are you, and you and you! Yes, one person can make a difference. This is how we can create the groundswell, in memory of Erin, and everyone else who has lost their life to an eating disorder.

This is how we can help save lives and families. Funds raised by local communities will be spent in those local communities to assist families. It is important that local families see the funds helping others  in their home district.

I would love for a benefactor to come along and offer to produce pins and a bunch of socks with the Sock of Hope logo attached, so socks and pins can be distributed  for much needed fund raising.

Meanwhile, socks lend themselves to many creative interpretations. Erin loved bright colours. She loved polka dots. I encourage you to write and share your ideas on how to help create the Sock of Hope as a symbol that can be recognised as: “here is someone who understands; here is someone who cares; here is someone who is ready to stand up and walk the talk in raising awareness of eating disorders”.

Speaking up to save lives and families

The media exposure of live cattle from Australia being slaughtered in sordid and shocking conditions in Indonesia, and the government response to the public outcry that has followed this exposure, demonstrates democracy at work.

It also provides a lesson for those of us seeking to improve conditions in Australia for people suffering eating disorders. Unite, speak loud enough and we can achieve change. Yes, we can.

Right now we need to speak very loudly, because the same Federal Government that is slamming the door on live exports of cattle to Indonesia, is planning to change to Medicare rebates for mental health practitioners under the Better Access Scheme. And the change will make the road to recovery for people with eating disorders tougher rather than easier.

Chris Thornton, a clinical psychologist and president of the Australian and New Zealand Academy of Eating Disorders has written a letter to Mark Butler, the Minister for Mental Health, seeking a meeting to explain WHY people with eating disorders need MORE  treatment sessions rather than less. Our government plans to reduce the already inadequate maximum of 18 sessions for subsidised treatments to 10.  If our government can show compassion to the suffering of our livestock, surely it can show compassion to people who have a horrible illness that can make their life, and that of their families, a living hell.

I urge you to follow ANZAED’s lead, and write to Mr Butler. We must speak up for the children, adolescents and adults who are so sick they do not know they are sick and therefore are unable to ask for help themselves.

Read the ANZAED Medicare response 2011 – click on Mr Butler’s email address and add your own message.

Chris Thornton also encourages action on his personal blog.

We are all glad the cattle will not suffer undue pain. We don’t want our children and families to suffer undue pain either. Let’s speak up so that they may receive the standard of care they deserve, too.

Recognising the value of life experience in treating eating disorders

My driving force in writing a A Girl Called Tim, apart from standing tall and showing my eating disorder that I was no longer its captive – that I was free – was the desire to connect with and inspire one person to recover. If I helped to ease the torment and improve the quality of life of at least one person, I felt my own suffering would seem worthwhile. My wish was to let others know they were not alone, and to raise awareness so they would not not suffer as long as me. In the few months since A Girl Called Tim‘s release, the reader response has been truly heartening. Women and men across the spectrum from age 20 to age 80 are sharing their thoughts and feelings (see Review Page) and describing their experience, often identifying strongly with mine. The result is a warm, fuzzy feeling; we all feel less alone; we feel empowered; we feel understood; we feel okay; and we definitely feel we want to live another day. My eating disorder journey began in 1962, at age 11. I was 55 when I reclaimed my identity. Five years on I continue to embrace every day, like I cannot get enough hours in each one, in my joyous bid to catch up on life. I tell my four beautiful children (now in their thirties) that I am ‘twenty-eight years old’ and they smile understandingly; they are happy for me.

Life is not easy for children when their parent has an eating disorder. I feel truly blessed that my children’s father, George, is stable, secure and safe, a truly wonderful man. He was the anchor for our children when my ED ran rampant  in my life and in their life as well. The effect on family members when a loved one has an eating disorder has become recognised only in recent times. Everyone is affected. The eating disorder sees to that. The love of the family, coupled with education and coping skills, are vital tools in isolating and conquering the illness.

I grew up in a time when little was known about Anorexia, and Bulimia did not even have a name. Thanks to passionate researchers, dedicated clinicians and devoted advocates, there is greater awareness today. The illness itself, however, remains extremely scary for families suddenly confronted with an eating disorder in their home, and remains challenging for clinicians. An unexpected but very welcome outcome of A Girl Called Tim is the growing the interest by health professionals. While the cause of eating disorders remains elusive, there is increasing evidence that collaboration of all involved – people living with an eating disorder, their loved ones and carers, the clinician, the researcher – is vital. Eating disorders are brilliant at isolating, dividing and conquering lives and relationships. We have to be more brilliant, and outsmart the illness – to save  lives and relationships. It gets back to that one word: collaboration. We all have a role to play; we each have a purpose; by respecting each other, and listening, we move forward.

A Girl Called Tim carries a strong message that recovery is possible at every age. That a growing number of clinicians as well as people living with the eating disorder, are recognising this, is a giant step forward. Early intervention with Family-Based Treatment was not around when I developed Anorexia. Clearly, if health professionals had given up on me, I would not be here to tell my story. Never, ever give up! Here, Claire Diffey – Manager, Victorian Centre of Excellence in Eating Disorders (CEED), explains:

‘There is so much to celebrate and praise about A Girl Called Tim. June’s eloquent and frank story of her life and struggle to overcome her eating disorder, depression and anxiety is compelling reading. She creates the picture so clearly that I felt I was there with her, agonizing as she stumbled and wanting to help her up, cheering as she made steps in progress to recovery.

The central issues June describes of the power of eating disorder with its tyranny that isolates, deceives, creates self doubt and loathing, leaving sufferers feeling unworthy and misunderstood are critical to understanding the battle against eating disorders. Despite her torment, the determination to understand what was happening to her and then confront her illness was powerful, even when June felt it has almost deserted her. The importance of family, her struggles to find her place and acceptance are central to her story. Acceptance and understanding are personified in the way she managed those final years of her parents’ life.

As described by Laura Collins, June provides us with not only a personal journey of discovery, learning and recovery. She also provides the societal and professional history and evolution from ignorance and misunderstanding of eating disorders. Over the last 3 decades there has been increasing research understanding and developments in treatments for anyone at any stage of illness. Thank you to all those involved in this work and to June and her fellow travellers who have helped us all understand, learn and improve treatments.

This is a significant book in providing insights into how early in life and insidiously eating disorders can develop, and the crucial need for early detection and intervention. But even if early intervention and recovery is not available or happen, there is now services and hope for recovery at any time. June champions of the need for support, therapy, and instilling and constantly fanning the sparks of hope.

Thank you June.’

Reach out, communicate, share with people you trust and who understand your illness

An important tool in recovery is knowing when to reach out for help. With practice, and the development of self-awareness, this skill can be acquired. Accomplishing this challenge was a crucial step in gaining freedom from my illness as it enabled me to defuse the eating disorder’s triggers before they went off.  I had been living with my eating disorder for more than 30 years when a wonderful therapist, Belinda Dalton, suggested I try to separate the thoughts that belonged to the real me, from those that belonged to my eating disorder. Belinda was one of my team of wonderfully patient health professionals who did not give up on me. Eight years passed while I learnt to identify which thoughts were mine, and which belonged to ‘ED’, and to acquire the skill to intercept and defuse those ‘ED’ thoughts before they translated into action. Another of Belinda’s gems of wisdom was: ‘Take care of your feelings, and food will take care of itself’. For decades I had automatically turned to food thoughts to cope with anxiety. I had used food to numb painful feelings instead of dealing with them. Learning to attend to feelings is another part of our recovery journey. A support team is essential. Reaching out takes courage as the eating disorder likes to isolate us from all who care about us.  I am glad that today the opportunity exists for us to communicate at any time of the day or night on the Internet with friends around the world who can support and empower us. Among the many wonderful women I have ‘met on the ‘Net’ since gaining my wings five years ago is PJ, a brave and determined mother who is on her path to freedom and inspires me with her blog. Love your self, and know that you can be free, too.

Mothers with Eating Disorders

Feeding their families but not themselves

Mothers living with an eating disorder while raising young children face a multitude of challenges, one of which is meal-time.

I received this e-mail query from ‘B’:

Do you know of any strategies that work with the Maudsley tenet of food being non-negotiable but translate this into an adult setting where giving over responsibility for the food preparation is not an option?

 

I’m struggling with knowing I need to eat, but also being responsible for having to feed everyone in the family, including myself – and the ‘including myself’ often becomes too challenging, so I give up. I talk myself out it! My husband is very supportive, but he also works very long hours, so it does not seem reasonable to expect him to come home at then cook for me – like it or not, being a mother, this is my job 🙂

I responded:

I know exactly how you feel. I experienced the same tussle of thoughts for too long – throughout my twenties, thirties and forties.

I often yearned to be in ridiculous confined and restricted places like hospital or anywhere, where meals would be provided at regular times. In such an environment I could eat the meals, as someone else would have prepared them, and they would be allocated. Somehow, this was acceptable. So for the few days I was in hospital after the birth of each child, or after an operation, I actually looked forward to meal time. The experience provided an insight that with support like this, I could become NORMAL!

Of course, when I returned home, my eating disorder behaviours took over. Within hours.

Like other mothers, at home in my own kitchen, I put the needs of others first.  In doing so, I was feeding my illness, allowing my eating disorder to thrive. I really needed someone as strong as a sergeant major in my kitchen, ordering me about, both in preparation and during the eating of the meals. I needed someone to take on my illness until I was strong enough (had regained sufficient of my identity) to take it on myself.

Certainly my recovery from my ED was much harder and was greatly prolonged for this reason. Recovery from an eating disorder requires full attention and support. It is hard for mothers to give their full attention to the recovery challenge.

For decades I would create nourishing meals for husband and children, and eat a few vegetables myself. Or maybe I had been upset and binged, and so would eat nothing at all.

Like ‘B’ I needed someone to take the control until I was recovered sufficiently to do so myself.

Strategies in the back of A Girl Called Tim evolved from my experience.

I know how hard it is to ignore the torment of our illness  — it will always try to convince us to put ourselves last. But ignore we must.  We must put ourselves first. Regain our identity, gain freedom from our eating disorder, and then the world is ‘our oyster’.

I suggested the following strategy to ‘B’:

Put a large calendar on your kitchen wall, and write down the meal times, and what you will eat for each meal. Show this menu to your husband the night before, and when he comes home the next day, get him to check that you have eaten at the correct time, and have eaten everything on the menu. After eating each item on the menu, use a highlighter to give yourself a tick for success. You must be honest with yourself.

When your husband comes home:

IF YOU HAVE NOT EATEN EVERYTHING ON THE MENU, then eat it NOW. Even if NOW is 11pm at night. Eat it now. Sit at the table with all the uneaten food in front of you. Eat the lot.

No avoiding your meals, okay.

They are ESSENTIAL to breaking free of the ED prison.

And next morning, the menu continues…even if you have eaten yesterday’s breakfast at 11pm, you start the new day with breakfast at 7am.  DO NOT MISS ONE MEAL OR ONE SNACK.

Can you enter a contract with your husband that you will not miss one meal, or snack (3 meals, 3 snacks DAILY)?

Every night, set out your meal plan (or do it a week in advance).

Part of the contract is that you must be TOTALLY HONEST with your husband.

You must be extremely courageous and ignore the torment of your illness.

YOU CAN DO IT!

Share this message with your husband.

Is he strong enough to sit with you, if you have not eaten all your meals and snacks for the day, while you eat them, when he comes home?

LOVE YOURSELF. Love your self. Despite your illness. Get angry at your illness. Kick its butt. The more you do so, the more you will regain your identity.

Your husband can help you kick its butt. But the inner strength has to come from you.

You will be free soon as you master this habit of three meals a day, and three snacks at regular intervals. Food is our medicine.

I am here pulling for you. I know it is akin to climbing Mt Everest without a Sherpa in sight; I know you can do it.

‘B’ responded:

I can see I have a lot to think about! My first reaction is the vision of me sitting at the table with an entire day’s worth of food sitting in front of me! I’ll wait until the kids are in bed and sit down with hubby and have a chat – I think it’s going to need our full attention 🙂

I had a great experience earlier in the year when I helped on a school camp and all the meals were just handed to me on a plate (literally) – and I ate them! So I know how liberating that can be. But real life is not that simple.

I wrote:

‘B’, you sound exactly like I felt and thought in my thirties. I often would not start eating until 6pm. Dreadful. But I was too scared to start before then in case I did not stop. Please know that you can recover. I did and you can, too. I wish you and your husband could attend a great program for couples that features in the textbook due for release next month (A Collaborative Approach to Eating Disorders, edited with Janet Treasure). The program, that helps couples work together in the treatment of Anorexia, is called UCAN, and is part of the Eating Disorder Program at the University of North Carolina.

‘B’ responded:

I have heard of UCAN – I would love there to be a program near me. It would be so valuable for hubby to be supported like that – at the moment he relies on me to give him information, and I’m not always the most reliable source of uncensored info 🙂
To seek further advice, I contacted the Academy of Eating Disorders and three members offered the following advice for mothers who are struggling at meal times:

Sarah Ravin suggests:

1.) husband could take family medical leave from his job for a few weeks to jump-start the re-feeding process

2.) relatives, neighbors, and friends could come over to help with some meals

3.) a relative could come stay with the family for a week or two to help with meals, to jump-start the process

4.) the kids could go stay with grandma or another relative for a week or so, to give mom a break and allow her to focus on her recovery

5.) the woman and her husband could plan meals in advance, writing down exact foods and quantities that she will eat (non-negotiable)

6.) regardless of his job, husband can make time to eat breakfast and dinner with her to ensure that she eats what she should

7.) husband can call her or send text messages at lunchtime and snack times to provide encouragement and keep her accountable

8.) the woman and her husband should find a good therapist who can help them with a FBT approach

Abby Sarrett-Cooper writes:

I feel for this mom, how she is working so hard to take care of her children and yet is unable to care for herself.  Cynthia Bulik is working on a couples-based program called UCAN.  This might be of value.  I noticed that the mom, in her comments, mentioned that she cooks for her kids but can’t expect her husband to cook for her.  My first thought was why is she not eating with them, and why is she not eating what she cooks for her kids.  Why is another meal necessary?  In Maudsley or FBT we don’t prepare different foods for different people in the family.  If the mom feels this meal is healthy and appropriate in general, then it should be for her as well. Not to mention the role modeling that is happening as she does not eat with her kids.  Part of taking care of her children is modeling healthy behaviour.  She will be eating not only with them but FOR them, as a role model and making sure she is healthy enough to care for them.  Perhaps the ED voice can be argued with in that fashion and battled as a risk to her kids. Discussing the data on risk running in families might support that argument. I am sure that what I am suggesting is nothing new, but I thought I would suggest it anyway.

Mary Cooper writes:

I have a couple of ideas that I hope would be of help to ‘B’. The first would relate to building in ways to remind herself of her commitment to eat that could help to counteract her tendency to talk herself out of eating a particular meal. So she might write herself a list of all the reasons she needs to feed herself regularly, including to be able to function as a mother, and read it every morning or before every meal. She can also keep a record of how she handles every meal.

So for breakfast, lunch, and dinner she could record whether she ate at all (0 if not), ate something (1), or ate adequately (2).

Monitoring herself in this way can help cut through a defensive tendency to tell herself she is OK when she’s not.

The second element I think of relates to trying to use her wish to nurture her children and feed them well. Maybe the starting point of meal planning and preparation could be the children’s nutritional needs and her attunement to their needs. Might there be a way she could cultivate a similar attunement and compassion for herself as another being who also needs to be well nourished?

It might even help her to have an image of herself as a child and to think of putting the food on a plate for her younger self who is hungry and needs nurturing.

Where to from here…

You can probably guess the outcome. ‘B’ suffered a few tough days as her eating disorder tried to make her feel guilty about reaching out for help. She also felt guilty, as I did, because mothers like us KNOW what we SHOULD be doing – eating meals with our children – but the fear and anxiety of actually doing so is like being shot into space without a spaceship. It is plain scary. It is horribly debilitating.

I am sure that ‘B’ can beat her eating disorder. She is courageous.

All she needs is support to allow her to focus on this one enormous task – beating ED, and regaining her SELF. My heart goes out to her, for I understand the struggle.

She knows what she needs to do; we need the health services and the employment sector to support her and her family, and allow her to do it. We need a bunch of UCANs.  The rewards will be great.

Information for Paediatricians

Keeping up to date with latest research outcomes and successful evidenced-based treatments and interventions is a challenge for paediatricians without a minute to spare in their busy day. However, keeping up to date is vital, for the new information helps to save lives. Parents and partners may also find the information helpful — for knowledge is the greatest tool in fighting an eating disorder. Knowledge will help you in seeking the best, most appropriate care in a clinical setting, and in providing most effective care for a loved one at home.

Maudsley Parents provide new information and resources on eating disorders and family-based treatment for paediatricians here.

F.E.A.S.T. encourages headspace to Update Focus on Eating Disorders

LET’S STOP STARVING EATING DISORDER RESEARCH, TREATMENT AND CARE

By June Alexander

It’s time for eating disorders to have a prominent place on the table when funds for mental health care are being dished out.

Eating disorders are devious, manipulative and dominating illnesses that have the highest death rate of any mental illness. Yet funding allocations have not recognised this.

The illness usually starts in childhood or adolescence, cutting many young lives adrift.

It can be preceded or accompanied by other mental illnesses. Early intervention is essential to prevent devastating long-term damage.

What is it like to live with an eating disorder?

I was in Grade Six at a one-room primary school when an upcoming event made me very anxious. I tried unsuccessfully to convince my parents I should avoid this event.  My anxiety became more intense and anorexia nervosa took seed in my brain.

This was in the early 1960s and I lived on a farm in Gippsland, Victoria. No electricity. No TV. No outside influence.

A doctor told my parents that, at age 11, I did not want to grow up.

That was as good as the diagnosis got.

I survived by transitioning into bulimia in my teens.

I gained some weight and looked ‘normal’. But I felt different. I felt I did not belong, like there was a hole in my soul and I did not know how to fill it. I was in a constant state of unrest. Each day was black or white; bingeing until both brain and feelings were numb, or counting calories, running on empty and achieving in one day what others would achieve in a week.

My embarrassed mother was always ‘at me’ to conform; asking ‘why can’t you be like other girls in our district?’

I felt more different, more isolated.

Married at 20, four children by age 25.

Depressed all morning. As from 8pm tonight on a diet – 600 calories average daily until I weigh 57kg, and then 1200 calories average daily until 54kg. (Diary excerpt, age 21, pregnant with first child).

Chronic anxiety evolved into severe depression.

With four children under six years, I resumed full-time work as a newspaper journalist. Work was essential to maintain a hold on sanity. It provided reassurance that part of me, at least, was ‘normal’ and worthwhile.

At age 27, the torment reached a crescendo. I became suicidal.

Completely out of control today; I hope never again to sink to such low ebb. When I get so low I would end it all if not for G. and the children. I have found I go to pieces when left alone. I eat, eat, eat and eat. It’s a wonder I haven’t burst. When I get like that I do wonder if it’s pills I need, or psychiatric help, or both. I need G. more than ever, and don’t like being without him, even for an hour, but of course he has to work.

I sought medical help, terrified the country GP would confirm that I was weak person for not coping; or that I was insane and therefore unworthy to be a mother.

The middle-aged male GP said I should have asked for help years ago. He said my brain had a gap or deficiency, which affected large brain messages—to do with mood, memory, self-esteem and so on. He assured me: ‘The type of person this happens to is usually excellent in every other respect.’

He wrote a prescription for T., to compensate for my deficiency and said: ‘You will be a new person.’

But I wasn’t, and I struggled to find courage to seek another opinion.

Six years passed before a psychiatrist provided a correct diagnosis. By then, illness had almost entirely consumed my personality.  Things got worse before they got better. Shortly after starting medication, my marriage broke up. More than 20 years would pass before I regained my identity from the eating disorder’s behaviours and thoughts that had become embedded, entrenched, entangled in my brain.

Age 38

… for years I have been seeking my identity, purpose, meaning, in life. Years. I conclude I am a prisoner to myself. If I don’t set myself free, if I don’t take a stand, I will live the rest of my life feeling frustrated, and unfulfilled; I will not know the joy of inner peace, or the achievements I can enjoy if my energies are set free in a positive way.

I can see that since I fell prey to anorexia nervosa – much of my creative energy has been wasted in a negative way, for I have turned it on myself; my own private obsession with food has robbed me of my true self. I have had some hard lessons. I know I can live with myself only if I accept that my mistakes, my bad experiences, can be the catalyst, the seed, for new beginnings and fulfilment.

I find great difficulty in understanding myself, my behaviour, my fears, my needs but I must try, if I am to correct myself and live the rest of my life free from the nasty inhibitions that have plagued my inner self for so long.

Medication over the years included Parnate, Tranzene and Adifax. I experienced deep anxiety and confusion, wondering if my feelings were due to my illness, the medication or ‘real’ me. Several drugs have been banned since.

At 39, maintaining hope:

May today be the LAST, very LAST, terrible day I binge. I feel absolutely terrible, unable to think straight.

I am fighting this thing inside me unto its death; this is the transition of me, afflicted by anorexia at 11 and then bulimia wreaking havoc on my thoughts and behavior, me, setting me FREE from all this to enjoy life, to give, to grow. This is what I am doing; 28 years is ENOUGH. The rest of my life I shall be FREE of the horrid torment.

But obstacles hindered progress. By now my parents and sister had lost sight of the real me. I was tabbed the one in the family ‘with a problem’. Alienation increased.

Feeling out of kilter. My mother yesterday visited G., my ex, but not me. I feel last in her priorities. I am not ready to cope with this rejection stuff, which hits at my very core and has left me a confused person, unable to fully appreciate my own children, because I have felt unwanted for so long — since 11 years old, at least. The most horrible thing is to feel unwanted, rejected, by one’s parents.

At age 41, I gained insight:

I have got myself worked out: I am NOT counting calories again. I am setting myself free.

After 30 years of trying, and failing, I can see this line of control is doomed to fail. I’ll take time to stabilise, while I convince myself there is no need to binge or over-eat today as it’s okay, I can eat when I feel hungry tomorrow.

I was becoming aware of what I had to do but did not have the necessary skills or tools. I visualised myself as a cicada. I had been in the dark for many years, and yearned to be like the cicada, one day emerging in the light and bursting into joyous  song.

The struggle, I would not wish it on anyone.

Four months on:

Want to go off Prozac and take nothing. My head feels strange. Every drug has side effects; it might help in one way but bothers me in another; life is very confusing.

Don’t know who I am. I’m a mother to four children but feel incapable as a parent and don’t know how I feel in a relationship with a man. My priority must be to find my centre, identify who I am, and work from this base.

Two more marriages failed. Men commented I’d several ‘voices’. Some people, including in my work place, replicated my illness with dominating and manipulative behaviours; life was chaotic. Extracting myself from this rollercoaster was very hard. I moved house 24 times, always hoping to leave the eating disorder behind.

To regain me, I had to stop running and face acute, black fear within. For decades it was easier to live dangerously on the rim of life.

The tiny part of the real me was aware of triggers that maintained my illness, but letting go was terrifying…as terrifying as the need to eat three meals a day. To be free, I had to learn to recognise and separate the thoughts and behaviours of my illness from my true self, and become sufficiently self-aware to defuse their triggers before they went off.  Alienated from my family of origin, I was extremely fortunate to meet health professionals who believed in me and gained my trust. With their guidance I gradually built sufficient resilience to avoid and withstand the triggers and protect my fragile, fledgling self. My health team (GP, psychiatrist, therapist) and my carers (children and friends) became my safety net, my lifelines.

In 2006, at age 55, I eased off all anti-depressant and anxiety medication. I had been on such medication for more than 20 years. Now I was ready to be ‘totally me’.

The birth of my first grandchild that same year was a great tonic. My children and their dad said: “This is your family. We are your family.” Family, in whatever form, is important.

By 2077, I was eating three guilt-free meals and three snacks every day. Food, the long time bane of my life, became my main ‘medicine’.

Now I was the emerged cicada, singing in the garden of life, in the brilliant sunshine.

Eating disorders don’t like light. Therefore the trick is to expose them at all times, with the following messages:

a) Eating disorders are not a choice, they are a serious mental illness;

b) Parents are not to blame; be pro-active and seek help as soon as you suspect your child is developing an eating disorder.

c) Early intervention is crucial; the Maudsley Approach, also called Family-Based Treatment, offers the best evidenced-based solution for early intervention of eating disorders in children and adolescents;

d) When an eating disorder develops, every member of the family is affected, and family involvement is integral to wholesome recovery.

A major healthcare challenge is the gap between evidence-based research and clinical treatments available ‘on the ground’. Although FBT originated more than 20 years ago, and has been in Australia for almost a decade, it remains like the new kid on the block in eating disorder care.

Many clinicians are reluctant to change their traditional treatment methods.

They need to be encouraged to do so.

Learning about evidence-based research outcomes, about the influence of genetics and neurobiology, has helped me understand my life and family. Surely it can help clinicians, too.

I have learnt about illness-based explanations for my decades-long struggles. I was not crazy after all. I had an illness. That’s all. I was not weak. Knowledge is power. There is a great need to disseminate this knowledge to where it is needed most – in the consulting rooms of GPs, in the homes of families, and with everyone who works with children and adolescents.

Today, many families are as scared and confused as my parents and I were four decades ago. They do not know what to do, or where to get help.

We need empowerment at every level of care: family, community, State and Federal Governments.

The establishment of the National Eating Disorder Collaboration (NEDC) in 2009 with Patrick McGorry as the chair is a major step forward. The NEDC has three years in which to develop a long-term approach to the promotion, prevention, early intervention and management of eating disorders – in effect establishing a national standard of care for these complex illnesses.

Meanwhile, there is much to be done at State Government level.

We need recognition and treatment of eating disorders as a major psychiatric illness; integration of eating disorder research and care into the mental health care structure; and collaboration between the various levels and kinds of care required in treating these disorders — GPs, psychiatry, psychology, social work, dieticians — and co-morbidities including depression, obsessive compulsive disorder, anxiety, self-harm and substance abuse.

In 2010, a young country girl was being treated in a major city hospital for anorexia; good headway with re-feeding had been accomplished by her parents with FBT but she had co-morbid anxiety. The hospital decided the girl’s anxiety had to be treated in another hospital, and dispatched her there. At this second hospital, staff were not trained in FBT, and the eating disorder resurged. The parents were distraught and could not understand why their daughter could not be treated for both anorexia and anxiety in the one hospital.

* RESEARCH: Anorexia Nervosa has the highest death rate of all mental health illnesses, and Bulimia Nervosa is close behind, yet funding for research into these illnesses, and the care and treatment of children, adolescents and adults with the illness, falls far short of addressing even the most basic requirements. Great research is being accomplished in Australia and internationally, especially in Family-Based Treatment and other treatments which promote an integral and collaborative approach between family and treatment team. However, much more needs to be done. More funding is vital.

*  TRAINING and EDUCATION: Academic pathways are urgently required to encourage graduates to pursue careers in eating disorder research. To enable prompt intervention with Family-Based Treatment, funds are required to train health professionals in Family-Based Treatment, provide skills-training workshops for parents and educate GPs and health providers generally on prevention and early intervention.

* TREATMENT, CARER SUPPORT AND RELAPSE PREVENTION
The length of time between the achievement of evidence-based research outcomes and the delivery of these outcomes into treatment centres has been cited as long as 17 years. Many people die in that time.
An Eating Disorder recovery program requires 24/7 care in the critical first stage of weight restoration. Thereafter, continued support and care is required in resuming personal responsibility for meals, re-adjusting to social life (often three years or more have been lost to the illness), participating in normal activities and attending to co-morbidities, relationship problems or emotional issues.

Community based care is needed to support families and patients in overcoming the revolving door situation for eating disorder patients whose physical health requires  ‘weight restoration’ in hospital. When sent home, without adequate support and supervision, these patients often lose weight again, and again. It is like taking a cake out of the oven half-baked. It sinks. The patients are often viewed as belligerent and cantankerous but it is their illness that is playing up. The patients are sent home when their weight is considered at a ‘safe level’ medically, but the illness remains in their brain and quickly takes over again.

Eating disorder recovery is long term and funds need to be provided for long term. The quickest ‘fix’, with early intervention within 12 months maximum, is currently with FBT. Even then, recovery takes a year or more. For sufferers who miss out, the illness can become a lifetime challenge, severely affecting every area of life. It sabotages and imprisons the mind. For many, the struggle becomes too much.

There is no excuse for this sad situation to occur today. We have the knowledge. All we need is the funds to put it into practice.
A solution for adults who have fallen through the loop of care and often don’t have family support, would be for 12-hour day care centres where medically-safe eating disorder patients can attend for three meals a day, five days a week, as long as it takes, with therapy, to recover sufficiently engage in the fullness of life.
An integrated, collaborative care program, backed by vital research, will maximise the value of each dollar spent in caring for people with eating disorders.

For information about eating disorders in Australia, go to: <http://thebutterflyfoundation.org.au>

In the UK, go to: <www.b-eat.co.uk/>

In the USA: <www.nationaleatingdisorders.org/>

 

IT’S TIME FOR A MEDIA MAKEOVER OF EATING DISORDERS

By June Alexander

I was pleased when a national television current affairs program sought to film an ‘exclusive’ segment on the release of my book My Kid Is Back – Empowering Parents to Beat Anorexia Nervosa.  The program producer wanted to film one of the 10 Australian families who tell their story in the book.

One family came forward and all was going well until the producer asked for photographs of the child, now 16, during her most ‘anorexic’ state – the producer presuming this meant when the child was most skeletal.

I responded that My Kid Is Back contains no photographs or weights.

I suggested that filming of the family-of-four take place around their dining table, sharing a meal. This was a great chance, I said, to portray a positive message about fighting eating disorders – to show that child and adolescent sufferers have the best chance of successful weight restoration and recovery when surrounded by a supportive and understanding family guided by family-based treatment professionals. The family’s around-the-clock love and commitment is vital in challenging the illness on behalf of the child until they regain the strength to fight it themselves and be free to resume their lives.

But this producer wanted to ‘shock’ viewers with a ‘sensational’ visual. A family sitting around the dining table, sharing a meal, was not it.

The segment was dropped.

I am disappointed that this television program wants to perpetuate distorted images, misconceptions and myths about eating disorders; that it wants to shock, shock and shock again, in the same damaging way, over and over.

You don’t need pictures to visualise the real story – the 10 families in My Kid Is Back are testimony to this.

The media is not to blame for eating disorders. Far from it. But it can do much to raise awareness, tell the truth, and ease the suffering caused by these hideous, deadly illnesses.

Last week, a Brisbane woman, 36, suffering a relapse from her childhood anorexia, overhead a new nurse say outside her hospital door: “You would think she would be over IT by now, wouldn’t you?”

We have to forgive the nurse, because her comment was borne of ignorance. Even in our hospitals, the views and knowledge of eating disorders in 2009 remains distorted, and extremely damaging. The 36-year-old is now being kept alive on a nasal gastric tube; she is clinging to a thread of her identity. Her anorexia is squeezing out her life.

Hear her plea: it’s time for a media makeover of anorexia nervosa.

Start by putting an end to the promulgation of unflattering images of emaciated girls on our TV screens and in pages of glossy women’s magazines. Such misleading images are likely to convince anyone with anorexic thoughts that they are not thin enough – more weight must be lost. Anorexia nervosa is an illness in the mind, and manipulates perceptions with deadly intent.

When anorexia nervosa rages, the sufferer does not want to eat or get well – because the illness is more powerful than their will. Small wonder then, that anorexia nervosa is difficult to treat and has the highest death rate of all psychiatric illnesses.

At a time when body image is being trumpeted, and we are shocked with images of people either emaciated or obese, the media is ignorant to the point of irresponsibility in depicting eating disorders. We need to look beyond the grossly damaging distortions of ‘thin’ and ‘fat’.

We need to stop treating sufferers of anorexia nervosa as some macabre catwalk and sideshow alley attraction for people to stare at, be repelled by and dismiss, saying ‘Crikey, all she has to do is EAT!’

Let’s set the record straight.

Instead of gawking at thinness, treat anorexia nervosa with the same degree of compassion as cancer. Do we gawk at or make derisive comments about a woman whose body has become emaciated due to cancer? No.

Eating disorders are not fads, phases or lifestyle choices. They are complex and devastating illnesses. Their exact cause is unknown but have a biological, genetic and environmental base. They affect people of all ages and can seriously affect physical and emotional health, quality of life and relationships. I know, because I developed anorexia when I was 11.

If you have imagined hell, anorexia is worse than that. The illness takes over the sufferer’s mind and robs them of their personality. Being ultra thin is only part of the suffering. Remember, this illness is in the mind. I took more than 40 years to recover most of my sense of self. Members of my own family often unwittingly fed my illness by making comments such as ‘you have Satan in you’, ‘you think about yourself too much’ and ‘there’s something wrong with your head’. At times, especially in my 20s and 30s, I was suicidal and almost joined the death statistics.

Anorexia’s mortality rate increases with the duration of the symptoms.

According to The Butterfly Foundation, Australia’s peak body on eating disorders, the outlook for those suffering from eating disorders in Australia is grim and statistics are alarming. The mortality rate is up to 20 per cent with many dying from suicide.

Eating disorders have been diagnosed in children as young as eight with an average age of onset at 17 years.

We don’t need shock-horror emaciated-grossly obese images in our homes. Families want to be supported by medical professionals and informed on how to help their children develop into happy, confident and secure young adults. The media can play a big role in this by feeding self-esteem instead of budding eating disorders.

Adolescents often develop bulimia as a consequence of their anorexia. Many sufferers continue to have anorexic thoughts for years after they have resumed a healthy weight. Haunted by food thoughts, they suffer low-self belief, self-doubt, have relationship problems and feel socially isolated. Not knowing where to turn for help, or if they can be helped, they feel ashamed and try to hide their illness, even from their partner and best friends. They are a prisoner of their mind.

Mass media such as TV and fashion magazines can help enormously in creating a healthier and more empowering culture and society.

With breast cancer, for instance, we are not subjected to shocking images of affected breasts; rather, we are encouraged as a community to purchase pink ribbons to raise funds for research and to treat sufferers and their families, their carers, with compassion. Let’s treat those whose lives are affected by eating disorders with the same respect.

Hit the delete button on images of emaciated bodies ravaged by anorexia nervosa. Treat eating disorders with sensitivity and reveal their complexity. Promote awareness of symptoms and strategies, and encourage early intervention. Promote preventative measures such as the building of self-esteem in children and families. Push for more training of clinicians and medical students in Family-Based Treatment, also known as the Maudsley Approach. And call for more funding into eating disorder research.

The establishment this year of the National Eating Disorders Collaboration in Australia is a welcome step in the right direction in addressing misconceptions, and the fragmented, disjointed and inadequate eating disorder services and support systems.

 

* For details on symptoms of eating disorders and where to get help in Australia go to: www.thebutterflyfoundation.org.au