a. Eating Disorders (blog 1): Introduction to the series of blogs

I have decided to write a weekly series of blogs - for an as yet undetermined number of weeks -  about an important health problem:  Eating disorders (ED's).

Why write a series of blogs about ED's?:  

Because I hope that I might be able to help even one person to escape from the hellish nightmare and the soul destroying prison which ED's are.  And I hope that at least one less person will die from an ED as a result of what I write.  And maybe one less sufferer will give in to the illness, defeated - but instead become inspired to fight back and seek help and … do whatever it takes to return to their life again:  Free.  Happy.  Healthy.  

And I hope that my words might be encouraging and helpful to family members and other carers of an ED sufferer - exhausted and frustrated by the relentlessly destructive and recalcitrant mental illness. I hope that something I write might shine a light of hope in the eternal darkness of ED's -  to restore faith that a sufferer of an ED can recover and return to them again.  Sufferers of ED's can and do return into the world and the light after recovery - free from the personality-distortions and the paralysing effects of ED's - which create an intolerable burden on sufferers - imprisoning them away from their lives and their loved ones - and destroying them from within.

ED's are insidious, horrible mental illnesses. They are, unfortunately, also increasing in prevalence in the world.  Between 1995 and 2005 disordered eating behaviours doubled among both males and females. 

At the end of 2012 it was estimated that ED's affected nearly 1 million Australians (about 5% of the population).  It is also estimated that 20% of females have an undiagnosed ED.

In the USA, according to the National Eating Disorders Association, ED's are more common that Alzheimer's disease (10 million people having ED's compared with 4 million with Alzheimer's disease).

Eating disorders are also increasing in non-western countries, although their incidence is still lower than in western countries.  Women in these countries are being exposed to cultural change and modernization and, with increasing globalisation, the western 'thin-ideal' is spreading.  And, with that, ED's are becoming more prevalent.  These changes have been seen in Asia, especially Japan and China.  

Another example of this occurred in 1998, where, 38 months after television first came to Nadroga,Fiji,15% of girls, aged 17 years on average, admitted to vomiting to control weight.  74% of girls reported feeling 'too big and fat' at least sometimes.  Fiji has only one TV channel, which broadcasts mostly American, Australian, and British programs.

ED's have the highest mortality rate of any mental illness.  The mortality rate associated with anorexia nervosa is 12 times higher than the death rate associated with all causes of death for females aged 15 to 24 years.  

The death rates from ED's are also likely to be higher than recorded, as often the medical complications of death are reported instead of the underlying cause of those complications - ED's. Medical complications include death from : heart failure, organ failure, malnutrition, suicide.

It has been reported that 20% of those suffering with anorexia nervosa will die prematurely from complications related to their ED (including suicide and heart problems).

And, even for those who do not die from an ED, the mental illness itself is horribly destructive.

ED's may seem, to some, to be what models and movie stars and cool thin people do. But media stories do not paint a true picture. ED's are not glamorous or cool, and they are not easily shrugged off when one gets bored of them. ED's are a horrible way to live and to die.

Anyone who knows someone with an ED, or anyone with an ED, will know that the illness consumes so much of your mental energy and your life - progress through life, and the achievement of life-milestones (like degrees, or jobs, or relationships)  is so much harder, if not impossible to achieve. Your life will often seem to stand still.  Maturity in life may elude you while you are ill - which can be for years.

Often, for chronic sufferers of ED's,  life mile-stones are never achieved.  Isolation and loneliness and depression push in - and life seems to stop - in a horrible nightmare of calories and weight and … numbers. The ED becomes a horrible prison where the sun never shines. Depression is experienced by approximately 45% to 86% of individuals with ED's.  

Old friends, other family members and, for that matter, virtually everyone else without an ED, move on in their lives - and leave the sufferer behind.  Stuck.  Other people don't mean to be cruel to carry on in their life journey without the sufferer of the ED - but the illness lasts for so long - many years usually. And the sufferer seems lost underneath the illness.  A faint shadow of who they used to be.  Who they were, without the illness, is gone.  The ED sufferer seems, often, paralysed within the mental prison of the illness.

Fortunately, recovery is possible.  

Work is needed.  Patience is needed.  The war against ED's can be won. Permanent recovery can be achieved, and a very happy and healthy life can follow.

So, with this series of blogs on the topic, I feel that I must at least try to do whatever I can to help anyone suffering with an ED: both the sufferer and their carers. 

ED's torture both.  

If I can help even one person, it will be worth any amount of time that these blogs take me to write.

Why me to discuss this topic:  

Because I am a survivor of  ED's:  

Because I suffered with ED's (anorexia nervosa and, later, bulimia nervosa) for four years in my youth - from the age of 13 years.  I have been recovered now, with no relapses, for 30 years. 

And, because I am the mother of a child who suffered with a severe ED (anorexia nervosa) from the age of 13 years, for over three years. My daughter was an in-patient in a large tertiary hospital for over a year during her illness.  She required naso-gastric feeding for two years, and she stopped all nutritional intake, including water, for almost two years. She was admitted to ICU (intensive care unit) twice - and on both of those occasions we didn't know whether she would survive to see the morning; or whether she would develop brain damage or organ failure as a result of these life-threatening events.  We also never knew whether she would ever recover.

However, like me, my daughter did recover from the ED. She has been recovered now for over 18 months  - with no relapses.  She is now 17 years of age and she is currently studying year 12 (her final year of high-school) with plans to go on and study at university next year.  She is happy and healthy and she is back to her old funny and sweet and interesting and wonderful self.  She has a strong interest in politics now!? The distant, emotionally  vacant, depressed and lonely soul imprisoned by the ED has gone.  My darling daughter is now living the life that she is destined for.  More wise from all the traumas that she has endured - like I was when I recovered.

What is possible for a sufferer of an ED?

Recovery!

Happiness!

A great Life!  A long and interesting and wonderful and exciting life!

I want your life to be as wonderful as mine has been!  Or better!  

There's a challenge for you!  

You deserve to have a wonderful life.  Not an easy life. I'll burst that bubble right now.  Life is not easy for any-one.  It is not meant to be easy.  But you can get through the adversity of an ED and recover stronger and wiser.  And wisdom is gained from experiencing and over-coming adversity in life generally.  Not only the adversity of ED's, obviously. And that will be something that  I will address during these series of blogs.  And I will look at 'adaptive coping mechanisms' to give you some tools to cope with adversity - without resorting to 'maladaptive coping mechanisms' - like relapsing with the ED, or turning to alcohol or drugs to cope, or other self-destructive things. 

A scary statistic for anyone with an ED is this:  Studies have shown that around 72% of alcoholic women younger than 30 years also have ED's.

Sufferers of ED's are more predisposed to other drug addictions, including alcoholism.  Another reason to learn healthy adaptive coping mechanisms during recovery from ED's.

I think that, for myself, I have been aware, after my ED's, that I have a predisposition for addiction.  And it was for this reason that I don't drink alcohol. I remember in my first year at university, studying medicine, some of the other students told me that they would have me 'drinking' before the end of the year. They set it for themselves as a challenge to get me drinking.  But, I decided that I never would.  So I didn't and I still don't.  I'm fine with other people drinking. My husband enjoys his wine, as do many of my friends.  I drink Coke or Pepsi or Lemonade instead. 

Learning to cope, in a healthy way,  with stress and disappointments in life - is necessary for recovery from ED's and avoiding relapse. It is also a useful skill for everyone - for that matter.  Strong adaptive coping mechanisms increase emotional intelligence: resilience especially. 

And it has been found, in psychology studies, that  Emotional intelligence (EQ) is a greater determinant of success in life that IQ intelligence.  In fact it has been determined that EQ accounts for about 80% of life success while IQ accounts for about 20%.

And, for the record, success in life is not all about status and high grades and becoming a millionaire and being 'better' than everyone else.  It is about finding contentment and purpose and meaning and love and companionship and … enjoying yourself. 

And, along the way, you will develop wisdom. 

And that wisdom will include things like, let me think:  Being kind to yourself.  Loving and accepting yourself.  Giving up on any ideas of 'perfection' in anything.  Learning that 'average' is a wonderful word. Living in the moment.  Being mindful - of a lovely sunset, the soft touch of silk on your skin, the scent of jasmine, the coolness of the ocean on your ankles as you wade along the shore …  

And no, in case you are thinking luck plays a big part in life success.  I have a very interesting psychological study about luck and people who think they are lucky or not lucky - which I will discuss in one of the blogs.  Luck plays not a very big part.  Now, seeing opportunities in life …  And how success is defined …  But that is for another blog discussion.

I will quickly add that some people do have more challenges in their lives.  More hurdles and for some people destiny seems to smile a little more.  But, a goal in life might be to make the most of opportunities which are present.  Work to your strengths.  Learn what in life truly is important for happiness - and a lot of money and high status is not the correct answer, as I have said.  

And, after all of that is said, remember the old adage:  Accept the things that we cannot change;  Change the things that we can;  And find the wisdom to tell the difference.  But, again, a blog for later in this series.

Those people currently sufferering with an ED may not believe me yet - but your path in life will open up for you and your life journey will unfold - once you recover from the ED.  And you can.  You'll also catch up on all those milestones that you may missed out on through being ill.  I have a belief, as well,  that life is a mixture of fate and choice.  I think opportunities present and things happen in life for reasons.  Recovery from this illness and coping as a carer of someone with an ED - will teach you many important life lessons - as it did for me.  

And, amazingly, after recovering from my ED, and after supporting and helping my daughter recover from her ED - the changes in my life which were necessitated by the crises created of the ED's have created a much nicer life for not only me but for my family as well. 

I now realise that these changes in my life were necessary.  But, without a serious crisis in my life, I would not have made them.  I would have drifted along with the status quo - relatively dysfunctional and less happy as that was.  

For example, my daughter's ED necessitated the following changes, to name just a few:  weekly Sunday family outings; sitting at the dinner table for meals regularly; changing my work schedule to be home more with the children; expressing feelings and emotions more and hugging my children more.  And, there are probably even more good changes that followed all the trauma. 

In fact, without changing my work schedule, which I did due to my daughter's ED, I would also have never studied writing (from the books I bought to fill my days and cope - as I will discuss in 'coping strategies' later) and I would never have written anything - stories, blogs, this … whatever I go on to write in the future.  And, I have learned that I love writing.

Many people, likewise, have told me about wonderful changes that have occurred in their lives as well following different crises - health related and others. But these crises demanded the changes be made.  And those changes were wonderful and set these people on different paths in their lives which turned out to be really lovely.  And they also found themselves wiser for the experiences.  That might well happen for you. I will discuss those things further during this series of ED-related blogs. 

But, for now there is a long journey to recovery ahead, for anyone suffering now with an ED.  And for now, I want you to know that you are worth the effort.  You are worth all the time it will take.  You are worth all of that and infinitely more.  

And as the words in the 1927 poem, Desiderata say: 

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be.

And you are meant to be here - in life.  You are  important and you are loved.  Even if you can't see that now.  And even if, currently, life seems lonely and unloving - things can and will get better - as you get better and away from the ED.  You will find those souls in the world who are waiting to love you.  As I did.

But, I say again, if I can do anything to promote the recovery of even one sufferer with an ED - then I will do all that I can.  It will take work.  It will take time. It will be hard. But you can do it - if you choose to.  As I say - your life is destiny and choice.  You can choose to be angry at whom-ever you think is to blame for your illness or lack of recovery or misery - or you can choose to fight to recover.  And reclaim the destiny in life waiting for you. And learn whatever lessons recovery will teach you.

I wrote an entire blog about 'victimhood' recently.  I have little sympathy for anyone who chooses to stay a victim.  You will notice that I have deliberately never said, in my discussion so far, that any-one is a victim of an ED.  They are a sufferer of an ED.  A victim implies that one cannot fight to recover.  The power to fight back is out of their hands.  And it isn't.  But, no-one else can fight the battle to get you better.  Only you can choose to do that.  Others may guide and support you.  But if you choose to stay ill and become a victim of an ED - that is your choice. You must own that decision.  

And, in case anyone out there with an ED thinks that I only recovered because I had many people to help me, let me say that virtually no-one helped me to recover. 

I fought to recover from the ED's which had tortured me for four years from the age of 13 years. My parents never even noticed that I was ill.   I was never admitted to hospital, or anywhere else, and I had no doctors to help. Or friends to help.  I kept my illness a secret - as many sufferers do. I was horribly alone with my illness.  I was  living in an abusive household.  My sister was put in foster care at 15 years of age - and she never lived at home again.  I obtained a restraining order in the courts against my abusive and violent father at 18 years of age.  And I escaped my horrible house while my terrifying parents were at work one day - when I was 22 years old.  I had arranged a safe house to escape to and I had saved money to pay my living expenses before I left  (All explained in my earlier blog:  Social media - a potential Pandora's box).  

But I did recover.  

I recovered from my ED at 19 years of age and I never relapsed again.  I found a loving husband, lovely friends, a great job as a medical doctor, and so many other wonderful things have happened since then.  

Which, had I not fought to recover from the ED, I would have missed out on.  

A wonderful life was waiting for me - beyond the illness.  Loving people were there - waiting to cross my path.  I just hadn't met them yet. 

And I learned many things from my illness.  Compassion was one of the things the ED taught me.  I understand suffering, and that people often don't choose the hard things that happen to them.  But, as I have said, they do choose to fight to get well again, and they do choose whether of not to fight to overcome other adversities as well. 

As a medical doctor with 26 years experience I can say that without exception life is difficult and filled with disppointments and hard times for everyone.  Everyone! Some people choose to fight to overcome these hard times.  Some people choose to give up - and make excuses - and blame the world - and feel very sorry for themselves.  The latter group miss out on so many joys in life. The latter group often become bitter and angry and depressed.

But they do have a choice on how to face life's challenges. 

Yes - this is tough love.  

I am being tough to say:  Don't play the victim card!  You are only a victim if you choose to be one.  Don't blame anyone else for your choices in your life!   Don't give me excuses why you cannot fight to recover.  I wasn't rich.  I had no rehab facility to recover from my ED.   I had no-one to even help me.  And I was stuck in a horrible abusive house. Although - I will discuss in this series - look for people to help you.  There will be people able to help.  If the first few people are no help - look further.  And read books about recovery.  And, I hope, my advice on recovery might get you started.

Also, with my daughter, I asked for help - frequently.  That was another lesson I learned begrudgingly from my daughter's illness.  I learned to ask other people for help.  And I hated to ask for help.  I loved to help others - but I wanted to be self-sufficient in my life.  But I needed help with my daughter to help her recover from the ED.  I couldn't do it alone. It was a hard lesson.  But, when I asked for help - so many people helped me:  Medical doctors, nurses, social workers, dieticians, psychologists, psychiatrists, friends …

And I needed them - for my daughter.  And I am eternally grateful to them.

But - tough love is needed for your recovery from an ED. I will not listen to your excuses!  But I will tell you that you are lovable and you have a life waiting for you and you are loved.  If I stood next to you now I would hug you and tell you over and over again - how wonderful your dear soul is. I would tell you that you have so much to offer the world.  You will be able to see that later.  But you do.

You are meant to be here - in life.  This is a hard challenge for you to overcome.  But you can and you need to try.  And, ask for help.  Even if you find that hard.  Just think - later you might be able to help someone else with the illness.  As I am trying to do now.

I will spend as long as it takes me - to help you.  Because you are so worth the effort.  You will come to realise that with time.  Low self esteem is part of the ED.  That will improve with work.  We will work on that during these blogs.

Why discuss this topic now: 

I've been meaning to write something which may help  other sufferers of ED's, and their families, for some time.  But, after surviving more than three years as the mother of a daughter who suffered from a severe ED, in the form of anorexia nervosa, which required intensive treatment and over a year in hospital, I needed a break from the illness and the subject.  

I wanted to forget about ED's for a while.  Live in the sun again.  Live, for a while,  oblivious to the daily nightmare of living with an ED.  Blissfully away from it all.

But, finally, after 18 months free from the illness in my life (most recently as a carer, as I've said) - I feel recovered enough to do whatever I can to help others with ED's.  If there is anything that I might be able to write - to help.  And inspire.  And comfort.  And reassure.  And advise - with regards to how I recovered, and things which helped me to help my daughter recover.  

Some final words on the topic of ED's:

For those people suffering with an ED, feeling that no-one understands how they feel, and for those caring for someone with an ED - not able to understand the illness:  these are some words my daughter wrote about the ED (anorexia nervosa) when she was 13 years of age:

It is like I was travelling down a river - with my family and my friends.  And then I was caught up in a large branch of a tree which hung down low over the water.  I'm not sure if I grabbed the branch, as I passed it, or it grabbed me - but I became caught up in its twisted limbs and it carried  me up and out of the water. Away up into the sky.  The river kept flowing and my friends and my family moved along with it.  But I was taken away from them all.   I could no longer move anywhere.  I was trapped. And, I found myself to be so high up in the sky that I was  too scared to jump back into the river.  I was so scared, and distant from the river and everyone else. I couldn't get back.  I couldn't get away from the branch - holding me.  I was too scared to let go … and jump.

In dreams a river is often the symbol of the passage of life.  A river represents the flow and passage of time. 

So, my young daughter's description was very apt, I think.  It still isn't clear how much of an ED is due to genes  (for anorexia nervosa research shows that genes may account for 50%-80% of the variance), choice, and other environmental factors (western media, the 'thin ideal' of western culture).  But, once the illness takes hold, it no longer matters how it all started. In this way it is similar to being trapped by  drug addiction or alcoholism.  The initial drugs or alcohol may have been a choice by the sufferer.  But, with vulnerable genetics, or other factors which we still don't fully understand related to addiction and ED's, the illness takes control of the sufferer - and choice is no longer an easy option.

And my daughter felt like the illness had pulled her from the river - while everyone continued on.

However, recovery is possible.  There are many steps and courage and patience and many lessons are needed to recover.

But - it is so important to try. And seek help to recover.  These are topics I will discuss.

I won't write this series of blogs as a doctor.  Although I am a doctor with 26 years medical experience.  But my medical knowledge is in medical areas other than ED's specifically.  Also, because ED's are primarily a mental illness, with the medical side geared more at keeping a sufferer alive during the illness (obviously crucial)  rather than helping a sufferer to recover - I will focus on  a cognitive approach -  which is geared at recovery.

And, as the mother of a child with an ED - I will also address topics related to:

 - coping as a carer of a someone with an ED, 

 - looking after siblings and not forgetting  them while an ED sufferer demands extra time and care, 

 - keeping a marriage together during the stresses placed on a family during this crisis.  A nurse in the hospital warned me early with these words: 'Eating disorders can break up families', she said sadly as she implored me to believe her.  After more than three years coping with my daughter's illness, I can now see how that would happen.

 - and many other topics I will recall and work out as I go.

One of the keys to surviving ED's is to pace yourself and to learn patience.  The average duration of anorexia nervosa, for example, is seven years.  And those who recover may not return to normal health.

And an ED will not be rushed.  Patience is something which I have needed to learn in my life.  Not the sort of patience where one might sit quietly in a traffic jam, listening to tranquil music and not losing one's temper.  That is a walk in the park compared to what is needed for surviving the frustrations and horrors of ED's. The patience needed to survive ED's is a whole different type of patience.  A life patience.  I will write a blog on the topic of patience.  Patience is a life lesson not easy to master.

A Chinese proverb which helped me learn patience through all the years of surviving was this:

'Don't push the river, it flows by itself.'

Once again the symbolism of a river is used.  As I have mentioned, a river often represents in our minds  the passage of life and time.  The proverb is therefore an apt one for the kind of patience needed to cope.  

The process of recovery from an ED will not be rushed. It is a slow process.  Patience and calm and pacing are necessary.  The journey back to health will be a long one. But don't lose faith.  Many lessons in life will be learned during the recovery process - for both the sufferer and those supporting them.

As I have said, at the beginning of this 'introduction to the topic of ED's' blog - I intend my blogs to be supportive and informative only from my own experience.  My advice may not help everyone and I cannot guarantee recovery.  No-one can guarantee that.  Life has no guarantees.  I will try to help - but I would strongly advise that anyone with an ED should seek the help of their local doctor - as a start.  And, a psychologist or psychiatrist would be very important in recovery - if you can arrange that.  Your local doctor will likely be able to help you here. 

Also, I would advise that you try to find a doctor that you feel comfortable with, and who has some understanding of ED's.

My experience with a GP was as follows:

When I first brought my 13 year old daughter to an elderly male general practitioner (GP): I knew that my daughter had anorexia nervosa.  I recognised it within 3 weeks of its onset - given that I knew the signs well from my own history with it.  I took my daughter to the GP as, in Australia, a GP-referral can give a patient 10 subsidised visits to a private psychologist.  This would save us hundreds of dollars and I couldn't write the 'mental health plan' form myself.   I didn't need a diagnosis of anorexia nervosa, however.  I was certain of the diagnosis. But the GP argued with me, at that first visit, that my daughter didn't have anorexia.  She was only slim, he said.  I told him that I had passed all my exams as a Paediatrician, I'd been a doctor myself for over 20 years, and I had suffered with the same illness at her age. I told him that she certainly did have anorexia nervosa and I needed a referral immediately for her to see a psychologist specialising in ED's.

'Oh, Ok then', he said. 'But I could do with a bit of anorexia nervosa,' he patted his round belly and laughing as he added. 'I could do with losing a few kilograms.'

I was not angry with him.  And I know that he is a good doctor and a kind man.  He just knew little about ED's and how awful they are and how dangerous they are. Many people, some GP's included, know little about the illness and how  debilitating and deadly it is.

However, the GP that I saw with my daughter initially certainly understands now that ED's are no joke to 'lose a few pounds'.   While my daughter was in hospital - and in and out of ICU for over a year - he received all the correspondence from the hospital. He has, since that first visit, been very sympathetic and helpful and kind.  He has learned - just as I have.

But another lesson there:  If you think that your child might have an ED but the first GP you visit disagrees, then see another one, or even arrange to see a paediatrician or a clinical psychologist who specialises in ED's. Not everyone can argue, as I did, with such certainty.

My first blog in this series, next week, will start by looking at the signs and symptoms of ED's and the definition of the three main types of ED's.  And a few other issues - which I will think about during the week.

One last comment: 
In Psychology the definition of hope is as follows - 

Hope: Bad times are not pervasive or permanent.

Remember, outside of the ED illness, there are still other happy parts of your life.  Even if it is a nice swim in the pool, a lovely sunset, or a good joke. 
And bad times don't last forever.  That's why we call them 'hard times'.  The sun will come out again.

And, below I have included the rest of the lovely poem that I mentioned earlier, Desiderata.

                              Desiderata Poem    

by American writer Max Ehrmann (1927)

Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible, without surrender, be on good terms with all persons.

Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant; they too have their story.

Avoid loud and aggressive persons; they are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter, for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism.

Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment, it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth.

Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be.

And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.

Max Ehrmann, "Desiderata".