Just what IS Anorexia Nervosa?

I have read a lot of scientific papers on the aetiology of anorexia nervosa (AN) over the past 6 years. The papers I read are always peer-reviewed and published in good quality journals – as opposed to a magazine or internet site wherein a health journalist writes an article about AN from bits of information they have obtained. The latter articles are sometimes biased (unintentionally) in accordance with the journalists’ understanding of AN and can generate over-simplistic ideas and erroneous assumptions amongst the public. The advantage of peer-review is that it holds more scientific merit in theory, but what I know from having peer-reviewed published papers myself (and from peer-reviewing papers for potential publication), is that ‘old boys’ networks’ exist. A researcher is often asked by the editor of the journal to suggest appropriate referees for their paper – who they know concur with their own ideas.

From my extensive reading, what I have concluded is that there are so many theories; so many ideas; so many paradigms – in relation to the matter of what triggers AN, and what maintains it…., that it’s almost impossible to ‘see the wood for the trees’. At present it is impossible to state that AN is elicited by a specific environmental/interpersonal/endogenous trigger. It is difficult to say who in society is vulnerable to this illness and what endogenous/exogenous factors drive the illness. Furthermore, there is no ‘one-size-fits-all’ effective treatment. Of course, re-feeding to a ‘healthy weight’ (which is individually specific…) and de-sensitisation to the anxiety associated with eating are vital to recovery. However, good nutrition and weight gain alone do not necessarily cure AN. The Minnesota Starvation Experiment is often applied to AN to provide an explanation for the cause of the illness; but unlike many people with AN, none of the volunteers who took part in this experiment struggled with the idea of behaviour change, accepting food, or accepting weight gain during the recovery period.

Over recent years, some researchers have started to study inherited traits that may increase an individual’s susceptibility to developing AN. This makes a lot of sense to me, because such traits are inborn and not a feature of our culture. Furthermore, if the risk of developing AN is determined by inherent traits and the expression of these traits is intensified by semi-starvation, then this may explain why culture is NOT the cause of AN. (So sorry, those people who focus on changing our culture in an attempt to prevent AN; I’m not convinced you’re on to a winner there….). If culture were the cause of AN, then many more teens would develop AN – because we do live within a ridiculously appearance-obsessed, vacuous and somewhat narcissistic world. I am all for changing our culture, but not because I think it will prevent eating disorders. AN is a rare illness.

Last week I read a paper that defined AN as ‘the relentless pursuit of thinness’ – and linked anorexic behaviours to our ‘toxic’ (appearance-obsessed) culture. In another paper, I saw AN defined as an illness wherein sufferers ‘base their self-worth upon their (thin) body shape’. That may be true for some individuals, but it is a very narrow and prescriptive definition of a complex illness. There are lots of people without an eating disorder who dislike their body shape/appearance and try to change their shape (and themselves) through diet. Furthermore, some people with AN do not have major body image concerns… The danger of over-simplistic ideas wherein an illness is considered culture-bound is that the antidote for AN is to change society. Of course that won’t do the trick… AN exists in all cultures. It is merely that those people with AN who live in less industrialised nations, in the absence of widespread fat phobia, provide different personal reasons for their anorexic behaviours. But I would still support a change to our society – away from self-obsession and appearance-focus.

In yet another paper, the authors described AN as a form of ‘restricted repetitive behaviours’ (RRB). This description made a lot of sense to me and my personal experience of AN. RRBs are observed in people with obsessive compulsive disorder (OCD), people with an obsessive-compulsive personality, and people with autistic spectrum conditions. I certainly have a longstanding diagnosis of OCD and definite RRBs. I have always said that if my AN were ‘about’ wanting to be thin, why would I have had the urge to exercise on the same treadmill in the gym at the same time of day, for the same duration. Why would I feel terribly frustrated if I entered the gym and found someone on ‘my’ treadmill? My obsessive-compulsive behaviours weren’t ‘about’ losing weight or expending energy; they were anxiety-related, very rigid ritualistic behaviours and fixed routines; the ‘side-effects’ of which were weight loss and the maintenance of a low weight.

I am beginning to think that there are many things we call anorexia nervosa and that it is not a fixed syndrome with a precise cause or common aetiology. And that is why I am in favour of individualised treatment and the avoidance of unified theories/models which purport to explain all aspects of this complex illness.

On a less grim note, I will end this post with a photo of my beloved boy, who incidentally doesn’t have AN.

Summer trip

At some point this Summer, I am planning to travel to the Isle of Man. Given the high rainfall of this island, I cannot guarantee that the weather will be warm and sunny, but I really want to visit the island and stay there for a few days.

There are a number of reasons why I would like to visit the Isle of Man.

1. I haven’t been to the seaside for 16 years and this small island is surrounded by sea!

2. I am trying to overcome my flying phobia and this would only be a short (and cheap) flight.

3. I am trying to overcome my agoraphobia and need to practise staying away from home.

3. My grandparents lived on the Isle of Man for a while and my parents had their honeymoon there.

4. I want to visit Mann Cat Sanctuary (http://www.manncat.com/)

I love the work done by Mann Cat Sanctuary – where unwanted cats are free to roam and are not imprisoned in cages. I am also intrigued as to how such a territorial animal can share its living space with dozens of other cats! (My two babies get along OK with one-another; apart from the occasional ‘punch up’, but they hate other intruder cats imposing upon their territory and will spit, hiss, fight and wail like banshees if another cat dare come near their home…).

Mann Cat Sanctuary

I have thought of doing some volunteer work for animal charities in the UK, but it would totally break my heart and damage me emotionally (welcome back PTSD…) if I were to come into contact with animals that had been abandoned or treated cruelly.  I am better sticking to non-contact means of helping injured/abandoned/abused animals….

Anyhow, I am now planning my trip

Meanwhile, here is a video I made of my little girl. She is incredibly intelligent and incredibly cute.

http://www.youtube.com/watch?v=1iZC_kQIDDk

When you can’t see a Future..

I have been asked the following question so often over recent years: “What made you decide to change?”

This question is, of course, in relation to anorexia nervosa (AN), and the people who ask me this question are usually people who haven’t seen me for more than 5 years. I guess that in terms of my physical appearance, I look very different to them. This is hardly surprising. I have gained 30+ pounds from a very low weight. These people tell me it’s not just that I look different; I seem different.

I tell them that life is much different from before and that I do feel much better (less driven; more hopeful – in the main). However, at times I still struggle a lot with anxiety and low mood.

But the question is an interesting one: “What made you decide to change?”

Being a somewhat detail-oriented, literal and pedantic person I dissect that phrase and probably provide people who ask with far too longwinded an explanation. I tell them that it was not that I decided to change, as such, but that I really had little choice other than to change. The only decision I made was to see my GP to request that I was referred for treatment. Treatment for AN had already been recommended by two hospital Consultants who had been treating me for physical complications arising from AN; however, as an adult who was not considered sick enough to be sectioned under the Mental Health Act (and therefore assumed to possess Mental Capacity), treatment would only commence if I made an autonomous decision to accept treatment. In terms of decision-making, I decided to accept treatment.

When I first saw the Consultant Psychiatrist to whom I had been referred, I was very anxious, uptight, distrustful and suspicious. Such is the nature of AN. He asked me all sorts of questions, which I answered honestly. I remember feeling annoyed when he asked me if I purged (vomiting or laxatives). Of course it was a reasonable question to ask and purging is a common behaviour observed in eating disordered patients, but I somehow felt he should know that I didn’t do that. Evidently I had very poor Theory of Mind at that point in time. The poor guy had only just met me…

My initial appointment with this psychiatrist lasted nearly two hours. Given that at that point in time I ate only a Malteser or an M&M for ‘lunch’, I became hypoglycaemic and dizzy during the session and had to eat a cereal bar in front of my psychiatrist, which was a total nightmare, because I hated people watching me eat. At the end of the session he told me I needed to gain at least 30 pounds and that I should aim to gain one pound each week. I saw a lovely dietician, who showed me photographs of what a normal-sized balanced meal looked like and gave me a diet sheet, but that was not what I needed. The fact of the matter was that I knew precisely what a healthy diet looks like and what to eat to gain weight. I totally understood the Laws of Thermodynamics. The problem was that I couldn’t bring myself to eat the food… What I really needed at that time was meal support; even though I would have hated it Big Time.

My recovery has been painfully slow. Recovery from AN; especially longstanding AN, is a process with ups and downs, not an event. I am still a work in progress. I am evolving, slowly but surely. I do not feel that recovery from longstanding AN can be measured by the speed of weight gain, but more by the extent of change in mindset and motivation to continue to eat well and to ignore intrusive and punishing thoughts that ‘instruct’ one to restrict food, to over-exercise etc.

For the past 2-3 years I have mostly been at a stage of recovery whereby I have the will to eat well and the will to find a life outside of AN. This was not the case when I first started treatment, or for the first 2-3 years. I was hugely ambivalent about changing my behaviour; but moreover, I could not see/imagine a future. I couldn’t see a life outside of my AN. I couldn’t see how life ‘fitted together’, or where I belonged in the world.

An inability to see a future after longstanding AN is very common. Some people in the 20s, 30s, 40s and beyond, who have had AN since childhood/teens, do not know what life is like outside of hospitals. I have never been deemed sick enough to be institutionalised; my treatment for AN and its physical consequences have mostly been outpatient. I managed to complete my education and to work despite having AN. That is not to say that I was in any way a ‘stronger’ person than those people with AN who live a life in and out of hospital. But the point I am making is that despite being apparently involved with ‘life’ while anorexic, I wasn’t really engaged in life. Intrusive thoughts dominated my thinking and my behaviours, and for a long time I somehow managed to fit these behaviours around studying and working. The price I paid was that I gradually became more physically compromised and more psychologically disabled.

How does a person with longstanding (or severe, enduring) AN succeed in moving beyond AN and actually imagining a future for themselves? Establishing good nutrition and gaining weight to a level that the body and brain are functioning is the first, crucial step. Thereafter, the person needs to rebuild their life – by rebuilding relationships, developing new hobbies and doing things that have nothing to do with AN. It isn’t easy. This is where therapy has helped me such a lot; in developing a life outside of AN.

Six years ago I didn’t think there was a life beyond the behaviours of my AN. I hated my thin body and my AN had nothing to do with pursuing thinness. But it had everything to do with anxiety, depression, obsessive-compulsive (anorexic) behaviours and fear. I thought I was such a hopeless failure that I didn’t deserve to exist; so why bother to eat? I felt my body didn’t deserve nourishment. I couldn’t see a future. Now I do see a future and I want a life. I take each day as it comes. I push myself outside of my comfort zone – and sometimes I fail.

I don’t think that anyone with longstanding AN ever makes a snap decision to recover. We usually put our faith in others to help guide us through that very difficult process of healing.

I will end this post with a photo of a weird and wonderful plant I took at a flower show last weekend.

Explanations…

Thank you those people who left comments on my last blog post… They (and you) are much appreciated.

As to how long I will continue to write about anorexia nervosa (AN) on my blog, I really don’t know. I desperately want to move on in my life, to relinquish any identity linked with my AN, but that’s not so easy when I still have to pay such close attention to my diet. By that I mean that I have to continuously ensure that I eat enough, especially if I want to be physically active, which I do. I love being active and am at my most happy when I am engaged in doing something physically active.

I cannot ever imagine being an intuitive eater. If I try to eat in accordance with hunger pangs and/or desire for food, I grossly under-eat and lose weight. And so I have to stick to a meal plan with an energy content of at least 2500 kcal/day. I have no desire to eat that amount and I feel more physically comfortable eating significantly less. I just don’t like food very much.

The impulse to delete my blog, which I talked about in my last post, largely relates to my identity and sense of self. When diagnosed with AN as a 12-year old, I was scared of the diagnosis and didn’t know what it meant. I hated having a diagnosis of any sort and so I refused to accept it. In 1977, in the region where I lived, AN was largely seen as a clinical rather than a psychological illness by the professionals who treated me. There was no talk of ‘body image’, no talk of popular culture and ‘pressure’ to be thin, and no suggestion that my mother had made me sick. And I say ‘thank goodness’ to all of that….

The professionals in charge of my treatment in the 1970s and early 1980s treated me as though I had a disorder of eating – which is entirely correct. Eating disorders are about eating. The key symptoms relate to difficulties with eating – and often also with appetite regulation. Some people (and I was one) also have difficulties with exercise dependence, while others (and I was not one) have the urge to purge food. At age 16, a psychiatrist diagnosed me with obsessive-compulsive disorder (OCD) – which was also accurate. My OCD started at least 7 years before I was diagnosed with AN.

But oh how things have changed over the past 35 years… AN has been attributed to bad/neglectful parenting, ‘controlling’ mothers, ‘enmeshed’ families, sexual abuse, popular culture, the social control of women….. I have observed it all and for many years I just kept my gob shut. I never spoke about having AN when I was at school, while I was studying at various universities, or in my first job. In my second job I became so sick that it was necessary for me to speak with occupational health professionals and my managers and explain aspects of my illness. I was visibly very ill, was unable to function and needed time off work. That was one of the hardest things ever to do: to fully accept and admit that I had a mental illness.

I found that many people to whom I mentioned my AN were supportive, but most hadn’t a clue what I was going through. They seemed to think that if I could gain weight and be happy with my physical appearance that I would be OK. None of them grasped that I was stuck in a pattern of compulsive behaviours that were driven by rampant anxiety. As soon as I mentioned AN to anyone, they would spout the usual guff about popular culture and pressures on women to be thin. *Sigh*.

One of the biggest difficulties I have found over the years is to find a professional who understands me, or is at least willing to listen. Thankfully I did find such an individual – who has helped me a lot. But most of the material I read on AN just leaves me feeling frustrated and misunderstood. Perhaps the ‘worst’ type of literature is that focused on ‘body image’. Can a person have an ED without having major ‘body image’ issues? YES!!!

I love Prof Cynthia Bulik’s research work on eating disorders; much of which is meticulous, hard science. But if her latest book relates to AN (prevention or treatment of) in any way, I will be very disappointed.

I haven’t read the book and I don’t know if I can bear to, to be honest. Feminist theory and ‘body image’ are two subjects that turn me off. If the book does relate to AN, I cannot see how it could help me in any way. My food restriction and over-exercising had nothing to do with what I looked like, what I thought I should look like, what I perceived that society thought I should look like – or what I saw in the mirror. What was important to me, while stuck in the illness, was what my body could do, functionally, and how I could control its function. But if Cynthia Bulik’s new book can help some women, with or without eating disorders, to be happier in their own skin, then that’s a great thing. I have no issues with the book itself and I am sure that it’s extremely well written. I have a lot of respect for Prof. Bulik’s research and intellect.

Recovering from ‘atypical’ AN is not easy when there is little literature or support geared towards non-fat-phobic-AN.

Deleting my blog (?)

Over the past week I have been debating whether to keep or delete my blog. I have only been writing it for 5 months, so it’s not as if I am a long-time blogger.

The main reason why I have considered deleting my blog is that I am deeply embarrassed about my history of anorexia nervosa (AN). This embarrassment relates largely to the way that AN is often portrayed in the media, as well the craziness of the ‘hardcore’ online ‘pro-anorexia’ community; a community that I have never totally comprehended. Yet, logically, my embarrassment is unwarranted, because I know very well that I never ‘chose’ to become anorexic.

In fact, I had never heard of AN when I was diagnosed with it as a 12-year old. All I knew was that I had developed an intense urge to engage in restricting behaviours around eating and to exercise until I was exhausted. Over a few months these behaviours had become compulsive and rigid. My mind had begun to operate like a pre-programmed computer, such that every day was pre-planned and the same, with an intense focus on controlling my food intake and exercising in a very particular manner. Not only did I feel compelled to live my life in that way, I was terrified of changing my behaviours, for some undefined reason that I didn’t totally understand. The easiest way to articulate this terror was to say that I was frightened of getting fat. But if the truth be known, I really hadn’t a clue why I was doing what I was doing. I just felt I had to do it.

I lived with an undulating course of AN for 28 years. If the severity of my AN were to be plotted against time, the resulting graph would be sinusoidal. I got a bit better in my teens – at least in terms of substantial weight gain and an ability to complete my schooling and do well in my studies. After the first couple of years of treatment and re-feeding, which were accompanied by the usual meltdowns that most teens with AN exhibit, I was not desperately unhappy. However, I wouldn’t say that I was happy. I was very anxious and unable to socialise with my peers, who I found frightening and unpredictable. I simply didn’t understand teen culture.

After doing well at my first and second university, gaining a BSc. and an MSc, improving my social life and finding a boyfriend (or to be accurate, he found me..), I relapsed during my research degree. The main triggers for this relapse were a move to a different part of the country, the lack of structure in my life, splitting from my boyfriend, feeling alienated and starting to over-exercise again. As the weight fell off through my vigorous exercise regime, my appetite declined and my fear of food intensified. I never wanted nor intended to lose the weight. Weight loss was an inevitable consequence of my behaviours.

I managed to work for 10 years in a teaching and research job that I loved, but lived to a regime of compulsive exercising and under-eating. My colleagues noticed and commented on my emaciation, but I argued that I was OK. I was doing my job well, so what more did they want? My anorexic behaviours had become ‘normal’ to me and I couldn’t imagine life without them. In fact, the fear of living life without these behaviours was so intense that I could see no point in being alive if I had to try to live life without restricting and over-exercising. I am not an impulsive person and I didn’t restrict or exercise because something would suddenly trigger these behaviours. I merely lived a highly regimented lifestyle.

However, long-term restricting and over-exercising are self-limiting. There comes a point when the body can no longer adapt favourably to such stress and it breaks down rapidly and badly. That happened to me 9 years ago, three years into a new job with a lot of pressure. In 2003 I had two nasty chest infections and it was downhill from there-on. I simply couldn’t function physically and my weight was critically low. For the first time, through a 25 year history of AN, I became very frightened. Even fracturing my pelvis in the 1990s (due to AN-related osteoporosis) had not alerted me to the need to seek help. Sadly, my doctors didn’t seem to recognise the significance of my low weight…. However, when I couldn’t get out of bed in a morning, was chronically and severely fatigued with horrendous pain, frequent fainting and heart problems, I really wanted to escape from AN.

Over the past 6 years I have had excellent treatment for AN. I have done really well in treatment, gaining a substantial amount of weight and largely maintaining my weight, even during intense urges to restrict food and to over-exercise. I have learnt to better manage my anxiety. I have developed hobbies and interests outside of my academic subject and the time-consuming behaviours of AN. I have one session of therapy left. Thereafter I will have no funding and I cannot afford to fund more therapy myself. But I don’t really want more therapy. I want to move on as a ‘normal’ person.

I have always been a ‘reluctant anorexic’… By saying that, what I mean is that I have never seen AN as an ‘identity’ or something to be ‘proud’ of. Neither have I perceived AN as a ‘lifestyle choice’. For me, AN was always a collection of compulsive behaviours and while sick, I never even considered that I had a choice not to do them, if that makes sense. It is the idea of being identified as a person by my history of AN that has made me consider deleting my blog….

The reason why I have written a blog is because I have wanted to process thoughts and offer topics for debate, if anyone is interested. I have also hoped that some of my posts may be of help to some people; especially to those whose AN has presented in a similar manner to the way that I experienced the illness. As a scientist I became interested in the science of AN during my recovery and have used science to aid my recovery. Furthermore, I have made contact with others via the internet who also have an interest in the science of AN and we have had wonderful debates Debating is a great way of learning and I love academic debate/discussion.

As to the future of my blog… I am not sure how long I will keep it. What I want is to move on in life. I wish I could erase my history of AN through erasing my blog, but that, of course, is impossible. I still have various health-consequences of AN to live with, both physical and psychological, but I hate perceiving myself as a sick person. The death of my father 18 months ago really brought it home to me that life on earth is short. We get one shot at it and I want to make the most of my remaining years.

The simple and special things in life…

These include…. The perfectly circular cat

Oops, I woke him up…

My other sweet baby

This was my digital artwork by the way… Tabitha would not really appreciate wearing a silly hat…

Project Sunflower 2012; three weeks after planting:

The tortoises I created from clay:

Two finished pots I made from clay:

The ‘smooching’ horses I fed with apples:

Given the title of this post, I would like to include a photo of my family, but for their anonymity I will refrain. One doesn’t require consent to upload photos of animals and pots!

Anorexia Nervosa and the irrelevance of the media

Nowadays, most people have heard of Anorexia Nervosa (AN). The tabloid press and celebrity gossip magazines seem to love stories about AN, especially when they are accompanied by grotesque photos and a sensationalist story (e.g. http://www.dailymail.co.uk/femail/article-2004003/Anorexia-pact-Identical-twins-compete-disturbing-way.html ). The latter news story annoyed me for a number of reasons; the main ones being the focus on these poor women’s emaciation and the suggestion that they had somehow ‘chosen’ to become/remain anorexic, because they were ‘competing against one-another’.

Yes, people with untreated AN often become emaciated. They become emaciated because they develop a pattern of compulsive behaviours around restricting food (and perhaps also exercise and purging). The illness makes them feel that they have no choice other than to obey the ‘anorexic voice’ in their minds that ‘instructs’ them to perform these (compulsive) behaviours. The fear of disobeying ‘the anorexic voice’ is HUGE.

Because people with untreated AN may be ‘scarily skinny’ (a phrase loved by the media…), the assumption made by many is that the person is ‘dying to be thin’ (another overused cliché…). And so when TV programmes interview a person with AN, they usually ask them to stand in front of a full-length mirror and to describe what they see. Because the anorexic individual’s brain is not processing sensory information (visual, bodily cues etc.) normally, the individual’s sense of self is grossly distorted. I have previously described how when I was very underweight and actively anorexic, I didn’t even recognise myself in the mirror (http://extralongtail.wordpress.com/2011/11/18/body-image/). The insistence of journalists to include the classic mirror shot in articles/programmes about AN merely adds weight (forgive the pun…) to the notion that AN is simply ‘about’ wanting to be as thin as possible.

I often read public comments to articles about AN in the Daily Mail, which seems to relish printing ‘news stories’ about AN, and the size of women’s bodies in general. The main thing that strikes me is the ignorance of the public. Of course, they operate on ‘face validity’ and supposed logic; i.e.

1. Person is emaciated.

2. Person doesn’t seem to want to eat more or to gain weight; therefore person wants to be emaciated.

3. It’s all because of the pressure of popular culture: skinny celebrities, models and digital alteration of photos to make people look thinner.

So I will re-phrase those points:

1. Person is emaciated. True, but they are emaciated because they are ill. Their brain is not processing ‘normally’ and they are stuck in a pattern of damaging behaviours.

2. Person probably doesn’t want to be emaciated. The reason why they are emaciated is because they are either unable to perceive their emaciation, or they feel compelled to engage in compulsive behaviours around restricting, exercising – and perhaps also purging and self-harming. It is not that they don’t want to eat, as such. They cannot eat, because eating terrifies them.

3. Digital alteration of photos does occur and the public may have a false perception of what celebrities (especially those in adverts for ‘beauty’ or health-related products) really look like. Many models are too thin. But popular culture doesn’t cause AN.

The Figure below is from a published research study (http://bjp.rcpsych.org/content/186/2/132.long) that investigated the incidence of (new cases of) diagnosed AN (and also bulimia nervosa) in the UK between 1988 and 2000.

During this 12 year period there was a lot of change in our culture, because the internet became readily available to the majority of people. Models got thinner and media images of very slim people were readily accessible. Celebrity gossip magazines became popular. People started to hear more and more about AN. Teen girls seemed to decide that AN is ‘about’ being pretty and popular, and some even ‘tried’ to develop AN. But did the incidence of diagnosed cases of AN in the UK increase? No!

I developed AN in 1977. At that point in time I was 11-12 years old and read a comic called ‘Beano’ and in my early teens, a girls’ magazine called ‘Jackie’:

‘Jackie’ was VERY innocent by today’s standard of teen magazine. There were few photos of celebrities, but there were photos of boy bands. ‘Jackie’ also contained knitting patterns, comic strip stories and guides about how to apply make-up. The ‘agony column’ included letters by anxious young teens who wanted to know if it was okay to kiss their boyfriend, and if so, how they should do it. There was no talk of diets, weight and shape, as I recall.

My mother read ‘Woman’s Weekly’, which I would also glance through from time-to-time. A popular advert in this magazine was this:

Despite huge changes in popular culture over the past 30 years, the incidence of AN remains low and has not changed significantly.  I don’t dispute that popular culture, including the mass media can make recovery from AN (and other eating disorders) more difficult for some people; but AN is not caused by the media.