Anorexia – the skeleton in the family cupboard

Anorexia – the skeleton in the family cupboard

I am not a doctor, psychologist or psychiatrist but I have a unique experience of eating disorders – my little sister, Pip, suffered anorexia from the age of eleven until four days before her 40th birthday when she died weighing 4st10lbs.  In his final report, the pathologist said that her vital organs were no bigger than those of a twelve year old.  He’d never seen anything like it.

Over the years I have read everything I can about the affliction in a fruitless search for help.  Where I wanted solutions and answers, I got symptoms and conjecture. There was absolutely nothing in the way of practical help or advice.

Being told that an anorexic’s main motivation is a desire to ‘take control’ is no comfort when they’re out of control.  Similarly, the hypothesis that the drive behind the disease is to postpone maturity does not provide clues as to what would make a sufferer want to grow up.

I concur that in order to find the cure you have to examine the cause, but full-blown anorexics like Pip manifest a complexity of causes that are as much exhausting as they are confounding.

Sadly doctors and specialists proved equally disappointing with simplistic text book analyses pronounced after a short series of interviews.  One after the other they slipped away, thwarted.  Well-meaning eunuchs.

Perhaps things have changed recently, but certainly our experience did not find much in the way of effective advice – the operative word being ‘effective’. There were plenty of professionals who cared and tried but they did not have the time, expertise or resource for constructive help.  Unable to succeed, they ran away, leaving our family abandoned as principle carers in a field of expertise in which we had no knowledge, experience or support.

I agree that, like the many other unfathomable ‘disorders’ that plague modern society, all cases have individual characteristics which makes it almost impossible to address anorexia with a ‘one size fits all’ treatment.

However I do think that there is much common ground which could determine an effective basic procedure to be moulded and adapted according to individual cases.

The following observations may help anyone currently suffering in a similar way.  In particular, I chart where I feel my family failed and what we would do differently were we to have our time again.

What is Anorexia?

Anorexia is not a regular illness. You can’t ‘catch it’ off other people like the ‘flu.  A GP cannot cure it and there are no pills you can take to alleviate it.  It’s not that simple.

Anorexia doesn’t start as a mental illness either.  Early anorexics are perfectly capable of lucid and reasoned arguments that defy common diagnosis for someone suffering mental health issues.  Seeking help from a psychiatrist in the early days is unlikely to prove satisfactory as it is more a psychological problem at this stage.

It does, however, develop into mental illness if allowed to mature.  (It stands to reason that if one starves the brain for long enough the way it works will ultimately be affected.)   If you let it get this far you are in deep water, so best advice is to nip early signs in the bud.

Finally, if left unchecked, anorexia can turn into an obsessive compulsive addiction manifesting itself in an extreme relationship with food.  It displays the same illogical tyrannies within the sufferer as alcohol and drug addiction and with the same fatal consequences.

Where Does Anorexia Come From?

I believe the most extreme cases of anorexia – the kind Pip had – are rooted in family history and genetics. It was an affliction that lay latent, awaiting a catalyst.

I often liken our family to that of a breed of thoroughbred racehorses – highly spirited, often passionately tempestuous but deeply competitive and ambitious.  Put a bit between our teeth and show us the finishing line and we’ll run the race of our lives – usually winning.  The downside is that when we’re not in a race, we flail around, looking for something else to compete for.

In a young adolescent, that competition boils down to two things – attention and love.  A desire to be noticed and heard.  Above all, to be valued for who and what they are.  Usually, by a parent.

Why My Sister, Not Me?

Although both of us were born within this ultra-ambitious gene pool, sadly I got all the aces. There was nothing either of us could do about it.  Pip was thwarted, unfulfilled and dissatisfied at every turn. I’d ‘been there and done that’ before her. Worse, I’d done it better than she would ever be able.

Pip became a fragile creature, particularly over sensitive to criticism and manifesting a different capacity for emotion than the average person.  In the same way as we all see colours slightly differently, I believe that Pip’s emotional metronome was so wide, extreme and profound that at times she went off the Richter scale.  She was doomed to frustration, unable to describe a spectrum of feelings in words that we could relate to.

However, whilst fragile, she was far from a wimp.  The strength of character and sheer will power required to develop full-blown anorexia is scarily ruthless and the combination of over sensitivity and ambitious brute ruthlessness created a powerful cocktail of contradiction.

Pip appeared happy go lucky and ‘normal’ for her first ten years and was treated as such by my parents.   Just a regular kid like me.

You cannot detect hyper-sensitivity in a seven year old nor do you expect it in response to the odd teasing comment or reprimand but I guess this is where it started.

A throwaway remark.

Something as innocuous as my father saying that the pattern on her socks made her legs look chunky.  She stored the comment, collecting others and creating a patchwork of perceived failings that formed an illogical logic in her head…

“My socks made my legs look fat = I’m not doing as well as my big sister at school = I fancy Jimmy down the road but he doesn’t fancy me…”

In her illogical logic, everything that was said reverted back to her but interpreted with a negative slant.

“You look well” equals, “You look fat”.

“Well done in your maths test” equals,” I didn’t expect it because you’re thick”.

Pip finally came to the conclusion, aged eleven, that somehow she was not good enough.

Every anorexic has a different tipping point at which stage a profound feeling of lack of self worth and a misjudged sense of rejection has developed. The only way forward is to go back and unravel it.

Which is when anorexia becomes a symptom of a family issue.

Anorexia – The Skeleton in the Family Cupboard?

In our defence, when Pip first showed signs of anorexia it was uncharted territory. Above conjecture, little was known about the condition nor was there much in the way of historical medical knowledge.  Previous generations simply did not acknowledge it – although there are plenty of examples throughout history.

I have letters from my mother to our GP dating from the 1970’s.  Both she and he skirt around the issue, afraid to put a name to it.

Over the years we compiled a compendium of meaningless words from doctors and specialists that tried to define what Pip suffered.  Was it an illness or an affliction, a disorder or an addiction?  Pip summed it up best, saying it was a disease because she felt dis-eased.

Even on her death certificate, the word anorexia is not used.  My sister died of ‘severe malnutrition’ which, to me, is only half the story.

To be frank, Pip’s condition was something that created acute shame in my parents.  They hushed their voices when talking about her appearance and avoided the subject in public.  My mother was ashamed to be seen out with her.

Pip was rendered a ‘dirty secret’.   This was not just because there was a fear of mental illness – tantamount to leprosy – but because of their unspoken fear of something else.  A reflection on them?  Were they bad parents?  Or was it a darker indication of a dysfunctional family?

Whether we like it or not, society purveys a frightening suspicion that ‘disorders’ develop because somebody somewhere has done something to cause it.  The terrifying spectres under the term ‘abuse’ circle overhead, promising to swoop uninvited and iniquitous. Thus an investigation into the roots of the disorder threatens to invade the dark privacy of a family’s Pandora’s Box.

If a family really wants to help the anorexic it has to be prepared to face this scrutiny – together.  It is the ultimate test of love to face your fears and admit the things you might have got wrong.

In our case, our crime was that there were two extremely bright and articulate family members with strong characters and opinions.  We dominated the unit to such an extent that there was never any space for the two more passive members.  Albeit unconsciously and inadvertently, it was bullying.

In particular, Pip took issue with our father who was distant, controlling and self-opinionated.

Compounding the dynamics of our family unit was our upbringing, which was typically middle class and of the era.  Discipline was fundamental to our DNA and meal times a potent battleground.  We were forced to eat everything on our plate and punishment for not doing so took the form of restrictive measures.  I remember sitting at the kitchen table confronted by three cold fish fingers for an entire afternoon whilst the others went to the cinema.  I have never eaten a fish finger since.

Our junior school had more Draconian methods. Miscreants were made to stand on a bench in full view of the rest of the school.  Pip was consistently subjected to this public humiliation and I too afraid to tell my parents how frequently this was happening in case I got her into more trouble.

I cringe at the memory now.

Contrary to the rules regarding our own (the children’s) mealtimes, my mother was continuously breaking them herself.  She was preoccupied with her appearance, being reasonably fit but overweight and constantly on diets.  Her diets were ridiculous, faddy and doomed to failure.  I think she thought that by not eating off a plate with a knife and fork somehow her calorific intake would be less.  She also refused to have her photograph taken because she did not like the resultant image.

The tension between my parents on the issue of my mother’s weight was palpable and cranked up at meal times when my father would pick on her for every mouthful.

I don’t think they ever thought about the presiding messages they were sending to their two impressionable daughters.

How Anorexia Starts

By the age of eleven my sister came to the illogical logic that, in comparison to the rest of her family she was ‘not good enough’.

She felt she did not match up, that she was not valued and that she had no ‘voice’ in our family.   She hated the way my father belittled our mother and had so little time for us girls.  She commented to me that he even viewed family holidays as a ‘job’ to be endured rather than enjoyed.

Her innate wilful competitive streak and strength of character drove her to take the matter into her own hands.   She reasoned that if she was unable to compete intellectually, she could in the way she looked …so a diet started.

But the diet was not balanced.  It was not something you would find at Weight Watchers.  It was faddy and extreme – either a stewed apple or a boiled egg – just one, once a day and nothing else.

Contrasting the amount of food she ate, her interest in the subject increased dramatically.  She bought books on healthy eating, specialist eating, eating for the soul – you name it – and eventually pronounced herself first a vegetarian and then a vegan, effectively jettisoning herself from the family food regime and making herself even more of an outsider.

The lies and subterfuge followed.  Pip would claim that she had eaten at school and was still full, so required no tea.   She would visit friends around meal times in order to avoid eating with us but claim that she had already eaten when invited to join them and vice versa.  Even when she did eat at home, she ate separately from the rest of us, at a different time and usually in her bedroom.  She was allowed to do this because my mother would observe, sotto voce, ‘at least she’s eating something.’

If we attended a social function where she was obliged to eat in public, she would spread her food around her plate or hide it under her knife and fork.  There would be several trips to the toilet during the sitting.  She would appear agitated and distracted, swinging her legs or tapping her feet incessantly whilst the object of her discomfort confronted her.  It was anxiety in the extreme but nobody recognised it as such. Eventually she withdrew from social functions because of the trauma that the food caused and she was permitted to do this, my parents being relieved not to have to suffer the embarrassment of her any more.

Similarly she withdrew from friendships and her own social activities – basically rejecting anyone and anything that challenged her eating habits.

She became lethargic, glassy-eyed and listless with sleeplessness, wearing deep dark trenches beneath her eyes.  Her body could not relax and sleep due to hunger.

She turned to exercise to make herself tired.  But once again, the exercise was not in moderation.  She would walk twenty miles, run for hours or swim endless lengths.  I asked whether she was embarrassed by the dark downy hair that had grown on her arms and legs and she replied that she deliberately attended the public pool during quiet periods in order to avoid controversy.  She was eventually banned on the grounds that she was bad for business.

Because her stomach had now shrunk, most foods caused her extreme discomfort.  She graphically described the churning sensation of ‘galloping horses’ in her stomach as if there was a mutiny going on inside. The pain she experienced was very real – it was not in her head – and she said that it felt like her body was recoiling.

She would make extreme and excessive claims, suggesting she was allergic to all food, and resorted to vomiting and laxatives in order to flush it out because of the pain it induced in her.

And she disguised just how bad it had all got by wearing several layers of clothes – even in the hot summer –  refusing to be seen without them.

You would be forgiven for thinking that we simply stood by and let Pip do this but you would be wrong.

We tried everything – sympathy, empathy, apathy, controversy and lunacy to try to get her to see the damage she was doing.  Nothing got through.  Pip refused to admit she had a problem and as far as she was concerned, the problem was us, her family.  We were in her blood.  That was the root cause.

She was right.

How Anorexia Ends

After years of hiding her affliction, Pip’s condition was a way of life – a compulsion. It was as much a part of her as my children are a part of me.  Pip became the disease and all our focus was directed on it, not her.  It was like living with someone possessed – a modern day devil that had stolen my sister and inhabited her body.

She was tyrannical in an obsessive addiction to her eating habits.  Her whole life was dictated by food – buying it, preparing it, a gamut of rituals around eating and then ridding herself of it before starting the whole process all over again.

It was claustrophobic and relentless.  Anybody who stood in her way was chewed over, spat out and systematically rejected.

It took its toll physically.  I do not think she ever had a regular period.  By her late twenties, periods had disappeared altogether.  Her hair was frizzled and greying like an old lady.  In her early thirties her teeth fell apart from the acid in her vomit and she was prescribed dentures.  By her mid thirties she was incontinent and in the last couple of years of her life she was incapable of walking without the relief of drugs.

And by drugs, I do mean hard drugs.

She had done smoking and alcohol over the years too, exploring other addictions to see how they compared, but heroin provided an added dimension of comfort.  I don’t condone her for taking it but I do understand why.  I’m told the influence of heroin has a ‘warm blanket’ feeling.  In a body contorted with pain and aching bones who wouldn’t find that appealing?

Her affliction also changed the landscape of our language.  As a family we tiptoed tentatively around most subjects that involved her, afraid of committing heresy and attracting an explosion of outraged expletives that would be directed with profound hatred at us.

And it was not just us.    Personal relationships ended before they began, only adding to her feeling of self-loathing.  She was so hard to love.  She had mountainous expectations of anyone she allowed to get close to her and triumphantly rejoiced when they proved her right by letting her down.

She was contrary and completely self obsessed.

There were times when I believed she actually enjoyed the mixture of pleasure and pain that starving herself produced and I suspect she got the same sort of physical pleasure as she would from an orgasm.

Her affliction had created the ultimate love affair.

But the double whammy in this was that the object of her love was herself.  There was no one-sidedness.  It was not unrequited. There was no possibility of being rejected and was completely unconditional with no risk of betrayal.  She was a self-contained unit with no need or desire for outside intervention.

She cannibalised herself.

Where is Professional Help?

I do not think that the UK medical profession has a handle on exactly how many people are suffering from anorexia because it is such a discreet condition.

Many families, like ours, will try to hide it.  Those for whom the hiding is no longer possible – because it becomes so visible – are probably the tip of the iceberg.

I  know of few specialist NHS units in this country that are dedicated to support and treat sufferers of anorexia. There were none to my knowledge during my sister’s lifetime.

The affliction cannot be pigeon holed easily in the same way that someone with a broken arm can go to the X Ray Department or a cancer sufferer to the Oncology Dept.

The anorexic will end up isolated and abandoned by the one profession that is supposed to be dedicated to help them. Pip was shuttled between so-called specialists and departments all her life and was consistently deserted as a lost cause.

There are some very good specialist organisations – mostly addiction centres – dotted around the country, but these are largely privately run and expensive to attend.

For someone like Pip who suffered profound and long-term anorexia, the years of treatment that were needed to overcome her affliction would have incurred bills that ran into hundreds of thousands of pounds.  How many families have a disposable wealth on that scale?

Ultimately Pip died not because nobody knew she was ill nor because no one cared, but because there was nobody who could help her and we didn’t have the money to buy the help she needed.

Conclusion – A Self Help Guide For Families

In hindsight I think that our greatest hope was in the early days before the affliction took hold and twisted Pip’s mind, when it was a stupid strange diet that was started for all the wrong reasons.

Pip should never have been allowed to put herself on a diet at age eleven and certainly we should have spent more time exploring why she wanted to diet.

Having started the diet, she should never have been allowed to take control of it, dictating what she would or would not eat and when.

We compounded her self-belief by thinking it was a fad that would go away and that is was better not to make a big issue out of it.

We believed her lies because we wanted to.  It made life simpler and avoided confrontation but our mute acceptance was interpreted as more evidence that she needed to ‘improve’ herself.

When it started to look serious we spent too long trying to sort it out ourselves with sympathetic cajoling.  Our pride and shame in trying to hush the problem up cost us valuable time.

And when we conceded that it was serious, we spent too long seeking professional help from inappropriate specialists.   It is a feature of the illness that the sufferer does not want to be helped or cured, resulting in preposterous boundaries and hurdles being put up.  We should have ignored these challenges and followed our own judgement, having her sectioned when it was necessary.

Finally, when we were out of minds with worry we spent too long with rational and logical argument about the flaws in her lifestyle and too little time embracing her and telling her how much we loved her anyway.

The root of my little sister’s affliction was that she knew she was loved but she did not FEEL loved by anyone.  It is the ultimate difference between the logic and the emotion of love.  Given my time again I would spend every waking minute holding her, trying to make her feel loved.  A child needs your love most when they least deserve it.

Top Tips…

Firstly be aware, as I now am, of family history. What are the dynamics?  Could you have that ultra-competitive, perfectionist streak in your gene pool?

Secondly, consider your thoughts, words and deeds very carefully. You are setting an example. Avoid implying a correlation between thin equalling success, attractive and loveable. Caution inappropriate actions or remarks and balance criticism with equal and opposite constructive words of approval and praise. Remember, there is a fine line between discipline and bullying.  Are you giving them ‘the best’ or an excuse for giving them the least?  Find the love within yourself and them, wherever it lies, because love is the answer whatever the question.

Do not let food become a battleground.  It is only fuel.  Avoid ‘diets’ and do not let the dieter dictate the terms.  Beware faddy extremes.

Take the desire for change seriously ie take them seriously and be prepared to make changes yourself.  Act swiftly and do not hope for just a passing phase.

Do not believe the lies even though you want to.

If anorexic tendencies appear, do not ignore them but do not indulge them.  (This may involve radical sacrifices on the part of your family.  In many cases, it requires a 24 hour watch. Do it.)

When talking about their affliction, talk about them and not the food.  By focusing on the food you are sharing and indulging their obsession.  They are addicted to the feeling of self-achievement that being thin provides.  Seek ways that they can fulfil themselves other than through food.

Don’t meet emotional suffering with logical argument.  They know that if they don’t eat they will die – that’s a logical argument but it does nothing to acknowledge their emotional pain.  Talk about how they feel, what makes them feel better and explore other things that they could do to elicit the same sort of feelings.

Avoid conflicts of control.  Concede, barter and exchange.

Seek out professional help immediately. Consider support from specialists in psychology, addiction and addiction therapies.   Be prepared to expose your whole family and encourage them to welcome it.

Bite your tongue, count to a thousand but most of all be brave, be proud.     You have nothing to be ashamed of.

Post Script

My mother died three years before Pip, worn down by the decades of hopelessness. They are buried together.  I have no one left who shares my childhood memories.

To a certain extent I feel it is Pip who has won her personal battle.   Her legacy to my father and I is the guilt we carry for the rest of our lives.

Pip was a beautiful, talented, loving person.  She brought warmth and humour to everything she touched.   She went to Goldsmith’s College where she studied Fine Art.  Damien Hirst got the first that year. 

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