Eating Disorder Awareness – things you might not know

**This post was written in February during ED awareness week**

This week, from February 24th to March 2^nd, happens to be Eating Disorder Awareness week – coinciding nicely with my project! So while lately my posts have focused on one specific treatment method, I thought I would switch things up a little bit and write about some common myths and misconceptions often associated with eating disorders, along with a few other important points that give a more accurate picture of what an eating disorder is really like. This ties in with my research into treatment methods because I feel that the social stigma, lack of compassion, and overall ignorance about eating disorders has a huge impact on how patients are treated, if they get treated at all. Despite the fact that eating disorders are so prevalent, they receive very little research attention and funding compared to other mental illnesses. Just to give you an example, the National Eating Disorders Association reported that the research dollars spent on Alzheimer’s Disease in 2011 (which affects 5.1 million people in the country) totaled $450 million dollars, for Schizophrenia (which affects 3.4 millions people) the funds totaled $276 million dollars – and for eating disorders, which affect 30 million people, the research funding was a mere $28 million dollars in comparison (NEDA, 2012). This has huge implications for treatment possibilities because when there are less research efforts, there are fewer effective treatments developed and much less social and public awareness about the disease itself. As a result of that, people who suffer from eating disorders feel alienated, judged, and afraid to seek help (provided, of course, that there even is specialized help where they live). The point of Eating Disorder Awareness week is to get this information out there to people who would otherwise not know, and to be advocates for those who are struggling to be one for themselves, by getting the true information out there about what EDs are really like, and why they are just as “legitimate” a disease as Alzheimer’s and Schizophrenia.

In my experience there are 2 kinds of misconceptions in society when it comes to eating disorders – one is that they are not serious illnesses, are attention-seeking and vain, or are something that is the sufferers’ own fault. This is truly troubling for a lot of obvious reasons, a couple of which I have discussed in past posts – such as the fact that Anorexia and other eating disorders are in fact brain and biologically based rather than a subjective choice. But another fairly widely held misconception is one that gives me chills – that eating disorders are somehow glamorous, or enviable. I’m sure we’ve all heard instances of people joking when talking about food they are consuming (if they are cheating on their diet, for example) “oh yeah, if only I were anorexic I wouldn’t have this problem!” – or other variants on this form of “humor”. The extreme thinness that is glamorized in our media through fashion models and celebrities seems to have bled over onto the (sometimes) extreme thinness of very ill people who have eating disorders – and this is a dangerous association. While yes there are some celebrities and models who have EDs, many of them are either just born for that industry because they are naturally thin, or have the time and money to spend on expensive trainers and specific diets with meals delivered to their houses – and truly are living happy, healthy, and yes glamorous lives. The life of someone with a serious eating disorder such as anorexia is the farthest thing from glamorous. But because of the secrecy of the illnesses (that is perpetuated by the social stigma and lack of awareness/open discussion), the only aspect of it that people on the outside see is the extreme self control and sometimes thinness that is observable. In our culture, thinness is desirable – and often people envy those who have that waif-like figure, even if it is internal desire/jealousy that they don’t outwardly admit – this is all part of the desire to fit the mold of what our society has deemed “physically desirable”. It follows, then, that people can mistakenly envy those with anorexia based solely on their weight or body, because they are unaware of the seriously unpleasant details of what goes on in the daily life of the person inhabiting that body.

I know this from reading but also through my own experience – when I was at my lowest point weight-wise when I was sick, I received the most “compliments” on how good I looked and how much people envied my body, even though when I started losing weight I was already on the low end of a healthy weight. I’m using myself as an example here to make a tangible, real-life point: at this point I was at a BMI of 15.5 (which is dangerously underweight), and all the way down to that point I had people telling me I looked great and how did I do it, or that they wished they had as much self-discipline as me. I’ve had friends with EDs who’ve had the exact same experience. I can’t figure out if this is truly what people were seeing even though we were all clearly ill at the times (and that’s just what the look of “beauty” has come to in our culture) or if this is a case of feeling awkward not knowing what to say, and deciding to give a compliment. I realize that it could seem like the safest comment in that situation but I have to say for people who find themselves in this predicament – if you feel unable to give an honest comment or inquire as to the person’s well-being, it is best to say nothing at all. These kind of compliments are dangerous, because they do serve to encourage the disorder for the affected individual (“How to talk”, 2012).

In order to dispel this myth of desirability or glamour with regards to EDs, I think it’s important for people to understand what really goes on behind the scenes, in the daily lives of people with EDs – the lesser known, unpleasant facts. I read through a few different articles written by both professionals and people who’ve had eating disorders, and come up with some of the important things that people often don’t know. First on the list are some of the unpleasant physical effects: as a result of the body’s attempts to insulate itself in the face of fat loss, a thin layer of downy hair (called lanugo) grows over the surface of the entire body. The individual’s sensitivity to any amount of cold skyrockets, to the point where sitting in a warm room can still leave them unpleasantly cold, especially in the extremities such as feet and hands (a result of poor circulation). Hair starts to thin and fall out, and skin becomes dry and cracked. A lesser-known result of starvation is its’ effects on sleep – many people with anorexia have incredible insomnia and get very little sleep. Fear of social situations becomes a problem because of the possibility of being faced with food, and therefor sufferers isolate themselves almost completely from both family and friends – this results in almost no enjoyable social life or activities. Another physiological response to starvation is irritability and deep depression – both of which serve to perpetuate the eating disorder by making it difficult to find the motivation to recover or seek help. Anxieties increase across the board, most notably when faced with food or the prospect of eating.

Something that I think most people don’t know is that people with anorexia actually think about food almost constantly – this has also been shown to be a physiological response to starvation. When the brain is deprived of food to such an extreme, the person starts to obsess about food – reading cookbooks and poring over websites with recipes and pictures of food, cooking a lot for other people but never indulging in it oneself, and even hoarding food (even without the intent of eating it) (Garner, 2008). These are survival instincts that are a result of the body in starvation mode, in an attempt to encourage the person inhabiting the body to feed itself. Hormones are also affected by dietary restriction, and one of the results of that is little to no libido or sex-drive at all. For those sufferers who are in relationships, this can have devastating effects on their intimacy with their partner. Concentration is another thing that becomes compromised, partly due to the fact that the persons thoughts continually return to food (and their anxieties about planning what to eat or what not to eat), and partly because the brain becomes cloudy and damaged when it is not nourished. I read somewhere a few days ago that your brain uses 20-30% of the calories that you consume (sorry I can’t remember a source for this), so it makes sense that when it doesn’t receive that nourishment, it becomes highly compromised.

There are many other parts of the illness that I haven’t touched on – other serious health risks that appear throughout the course of a serious eating disorder (i.e. low heart rate, electrolyte imbalance, etc.), and the effects it can have on families and other relationships. There are many things that are just downright unpleasant, such as the fact that after a period of starvation, the body has a difficult time adjusting to eating again, which results in bloating, nausea, gas, and intestinal pain. The most insignificant decisions can seem impossible because of the brain’s decreased ability to function properly, and so deciding between a yogurt and an apple can be agonized over for more than an hour. These things may seem small and trivial, but I think they are important to get the overall picture of what these illnesses look like. Once you understand or know what it really must be like to live it, it’s hard to imagine someone “choosing it” as a “lifestyle”.

Imagine for a second that you are constantly consumed by thoughts of food, eating, or cooking, and spend much of your time looking at pictures of these things that you will not allow yourself to indulge in or even sample. Imagine, too, that for some reason that you can’t pinpoint yourself, you are doing strange things such a hiding or hoarding food, even if you can’t allow yourself to eat it. You can’t sleep because your body is so hungry, but you can’t feed it. What if every morning, getting out of bed and showering was a task that left you short of breath and leaning against the wall for support.  It doesn’t sound so glamorous when you paint the actual picture of what life looks like for people who suffer from these illnesses. The fact that some people harbor this belief is proof, in my opinion, that there is a serious lack of awareness and information out there in our society about the truth of these illnesses . Take pro-anorexic websites, for example – which I will likely do a whole post on soon – their glorification of the aesthetic and “self-control” aspects of these disorders are so misguided. You will not find any information on these webpages detailing the horrible and unpleasant side effects (not to mention dangers) of starving yourself to death. The simple fact that there is even a movement calling itself “pro” anorexia is wrong. This isn’t an issue that is up for debate where you can take a side (like abortion with its pro-life or –choice) – it’s a devastating, life-threatening disease. Imagine if there were websites somehow promoting schizophrenia, or pro-autism pages; it doesn’t make sense. Pro-anorexia is part of the problem that perpetuates the idea that it is possible to decide to have an eating disorder. You can’t be “pro” something that doesn’t have sides to take. It is my hope in the awareness week actions that I’ve taken, such as sharing important information, articles and facts via social media and the Internet, that people might think twice when they are faced with discussing EDs. That maybe the next time they hear someone make a joke or snide comment about something like anorexia, they might interject with a few of the realities associated with these illnesses – so that people may realize that much like autism or schizophrenia, eating disorders aren’t something to joke about. In keeping with the tagline or theme of Awareness week this year, “everybody knows somebody”.

References

National Eating Disorders, A. (2012). What are eating disorders?. Retrieved from

http://www.nationaleatingdisorders.org/sites/default/files/ResourceHandouts/Gen

eralStatistics.pdf

How to talk to someone with an eating disorder. (2012,

October 24). Retrieved from http://www.eatingdisordersonline.com/articles/eating

-disorders/how-to-talk-to-someone-with-an-eating-disorder.

Garner, D. (2008, April 16). The effects of starvation on behavior: Implications for eating

disorders. Retrieved from http://www.possibility.com/wiki/index.php?

Reducing Eating Disorder Stigma

In my research I came across a video that was just so great, I instantly knew I’d need to write a post about it. It is coverage of a talk given by clinical psychologist Chris Thornton, at a conference in Australia called “The Mind and Its Potential”. The video itself is only about 18 minutes long, but in that short period of time Chris Thornton manages to address several critical points about understanding eating disorders, in a way that encourages compassion and genuine understanding for people suffering from these illnesses. The title of his segment is called “The Brain, the mind and eating disorders” – and the essential thread that runs through the entire talk is that eating disorders are a brain-based illness. So much misinformation and ambiguity tends to pervade society’s perception of what causes eating disorders, and his factual presentation of the biological processes that are involved with these disorders does a great job of clearing up these common myths and misconceptions.

One of the most important misconceptions (in my opinion) that he addresses is that eating disorders “look” or present in a certain way – notably, that someone with an eating disorder is emaciated, or severely underweight. It is actually a relatively small percentage of eating disordered individuals that fit this description. Many people who are battling serious, life-threatening eating disorders are somewhere within the range of a “normal” weight – you cannot tell by looking at them.

Another of the myths he mentioned is that “eating disorders aren’t really serious”, which of course is dangerously inaccurate. In fact, Anorexia has the highest mortality rate of any psychiatric disorder. Unfortunately, the outcome of this particular myth is that people in general (but he also mentions clinicians which I think is important to highlight) don’t take eating disorders seriously. The belief that eating disordered people are “narcissistic, self-obsessed and caught up in the drive for thinness” still seems rampant, which would seem to suggest that eating disorders are, on some level, a choice. So in effect, what Dr. Thornton does to disprove these myths is educate people about the biological/brain processes that are directly implicated in eating disorders (mainly anorexia, for this presentation). An example of this is that people with anorexia have “central coherence difficulties”, which refers to difficulty seeing the big picture, or focusing too much on certain details (such as calorie counting, weight control, etc.). This results in a genuine inability to step back from these detail-oriented behaviors and see the big picture, such as how their eating disorder is affecting their lives and the people close to them, as well as the fact that they may be dying from it. As he so eloquently puts it:

“…so once they get locked in, they’re not willfully making a choice just to focus on calories and weight and shape – they’re hard wired not to be able to take a step back. It’s not actually their fault.” (Thornton, 2012).

Something that I learned for the first time in watching this video is the biological basis behind anorexics’ inaccurate perceptions of their own body – that is, looking in the mirror and not getting an accurate picture of what they really look like. When someone with anorexia looks in the mirror, there is very little activity occurring in the visuo-spatial area of the brain – where the picture of what they see would normally form (as opposed to when they look at other people, in which case the brain activity in this area is normal). Instead, the brain area that lights up when they see themselves in the reflection is the amygdala (aka the “fear center” of the brain). This also happens when people with anorexia see or smell food. The way that Dr. Thornton explains the importance of this is that when we are afraid of something, “two things happen: it looks bigger, and we avoid it”. I think my favorite thing he says about this is “it’s not your fault that your brain is giving you pretty crappy information”.

There is just one more thing I want to quote from his talk because I think it really sums up the information and drives home the point:

“We have this myth, that neuroscience has helped us bust, that eating disorders are willful choices. Anorexia Nervosa is a brain-based illness. To think of somebody willfully having an anorexic illness is like saying to someone with schizophrenia ‘well stop willfully having that delusion about alien invasion – just stop it.’ Not a hugely effective therapeutic technique, and yet for years our treatment of anorexia is ‘just eat’. We don’t have willful schizophrenics; it makes no sense to think that we have willful patients with an eating disorder”. (Thornton, 2012).

This last part of the quote touches on the whole reason I chose this topic for my project: why conventional treatment (i.e. hospitalization and refeeding) so often fails and results in high relapse rates, and what alternative methods do have higher success rates.

For me personally, there was one point he made in this video that really set it apart from other videos I’ve watched over the years, where mental health professionals educate about eating disorders. In his talk, Dr. Thornton actually talks about the fact that stigma and negative attitudes toward people with eating disorders also exist in the medical profession – that is nurses, doctors and other practitioners who still seem to blame people with anorexia to some extent for their behavior. To throw in a personal anecdote that I don’t mind sharing, since it will illustrate his point pretty perfectly, I experienced this attitude when I was 17 years old at the QEH. I was brought in by my mother in the middle of the night because I was bradycardic (low heart rate), which was a result of an eating disorder. At one point while my mom was elsewhere, the nurse who was attending to me came into my room and as she hooked me up to the heart monitor said, “you know, we have patients here who really need our help. Ones who aren’t just looking for attention”. This was a number of years ago, but it serves as a reminder that even people in the health profession are affected by misconceptions about eating disorders – and that is where it can start to have very serious effects on the patients they may end up treating.

Why is this important in terms of looking at treatments for anorexia? Well, for the seemingly obvious reason that you can’t provide a patient with genuine and compassionate treatment if you believe that to some degree they have chosen their illness. Perhaps that is part of why inpatient hospitalization, where the primary focus is often a reward/punishment system that accompanies forced refeeding, doesn’t have a great reputation for lasting success. If nurses and doctors who aren’t trained to specialize in eating disorders are assigning some form of blame to the patient, how would they ever establish a rapport with them, let alone a bond of trust?

References:

Thornton, C. (Writer) (2012). The brain, the mind and eating disorders [Web]. Retrieved              from http://www.youtube.com/watch?v=wRKV1ltiSFc.

Experiences in treatment: an interview with a friend

I think I am now going to tie together some of the main issues I have addressed in past posts by grounding them in real-life experience – mainly that of a friend of mine who has suffered from a life threatening eating disorder for many years. She is currently in her twelfth month of treatment at Peggy Claude-Pierre’s clinic in Portugal. Peggy’s philosophy and approach to treatment is the one I’ve focused on most often throughout this project, though I’ve looked at a variety of methods and valuable sources. Throughout my research, I find myself continually coming back to her book as the most logical, effective, humane and above all compassionate approach to understanding and treating eating disorders. I should stress that this is just my opinion – I am no authority on the most effective treatment methods – but as someone who also struggled with an eating disorder for 8 years, I can say without question that of all the treatment options I wish had been available to me, she is at the top of the list. Reading her book from the dual-perspective of a student wanting to pursue ED treatment professionally as well as a recovered eating disorder patient, I can say without question that she has the most accurate and genuine depth of understanding of these illnesses of any author/researcher or practitioner I’ve encountered. And again, in my humble opinion, I believe that understanding and compassion are the key elements that unlock the door into that elusive world of effective eating disorder treatment.

I am fortunate enough to be able to directly quote some of the things my friend had to say about her various treatment experiences over the past 10+ years. She has experienced most methods of treatment that I can think of (inpatient hospital admissions in pediatric and psychiatric wards, residential treatment centers, individual therapy, support groups, and alternative therapies anywhere from yoga and acupuncture art and horticultural therapy), and so one of my main questions for her was which treatments she has experienced positively/negatively, and why. The main quality she described as important in the positive treatment experiences she’s had is that they were “holistic in nature (mind, body and spirit), and included alternative therapies”. Another thing she highlighted is one that I’ve discussed in previous logs as something that’s often overlooked: allowing input from the patient as an active participant in his/her care. A patient’s involvement in treatment as well as their opinions, views and experiences about the pros and cons of different methods is an area I feel is highly under-researched in the field of EDs. Given their reputation as one of the toughest psychiatric illnesses to treat effectively, it seems to me that researchers could potentially get a good deal of valuable information from exploring the patients’ perspectives on why they feel certain treatment methods are ineffective. And certainly, involving patients’ as active participants is supported by self-determination theory (Ryan & Deci, 2000; Vansteenkiste et al., 2005) which posits that “when a patient experiences feelings of autonomy, personal responsibility or volition, they can better engage in the therapeutic process” (Darcy et al, 2010). I think this must be especially true for the treatment of adults with eating disorders, since having 100% of your decisions made for you would likely feel as if you were being treated as a child – which is probably not seen as favorable by adult patients.

I mentioned that my friend has been under the care of Peggy Claude-Pierre’s clinic in Portugal for about a year now; here is what she had to say about this particular treatment experience:

“Currently, I am experiencing a very different treatment approach, which is certainly the most constructive of all. I have 24-hour care, by people who are trained and understand this mindset. These people come from backgrounds in nursing, psychology, physiotherapy, nutrition and medicine. I have completely individualized care: one-on-one counseling sessions, again with counselors who are trained in this method. I am treated with the absolute utmost respect, love and kindness. The focus is not primarily on food, this comes naturally as the mind moves from negativity and subjectivity towards positivity, objectivity and wellness. I am fully supported and loved through anything I need to do… any challenges or struggles along the way. I am kept 100% safe – safer than I have ever been, even in locked psychiatric units. I am surrounded by positivity, and people who counteract the negativity that goes on in my mind. I am encouraged and supported to safely do things that I enjoy, and grow into emotional maturity, getting in touch with myself as well as activities; things and people who make me feel good. My spirituality and individuality is respected. My family can be involved as much or as little as I/we want. It is not group-based in nature, so there is no comparison, competition, or worrying about others. Meals and any necessary weight gain is done in a gentle, healthy (medically supervised), non-traumatic way.”

Given what I have both read and written about Peggy and her treatment philosophies, I was not surprised to hear the wonderful things my friend had to say about her clinic. However, if you look at her treatment history (which is a list almost a full page long) it’s reasonable to assume that one of her past therapists/doctors might be surprised to hear that she is indeed thriving in a treatment environment. My friend is the perfect example of some who disproves the misconception that EDs are in any way a “choice” or something that victims could turn around if they wanted to. This is a woman who has sought treatment all across Canada, and worked for years of her life at trying to overcome her illness. Despite setbacks and very poor health, she did not give up looking for the treatment that would work for her. If she was choosing to live in this state of illness, why would continue to persevere and seek treatment? Why also does Peggy’s approach work for my friend when, given her history, she might have been labeled by doctors as “chronic” or “treatment-resistant”? Perhaps it has to do with the fact that Peggy doesn’t see patients as “treatment-resistant”, because she believes that everyone has the potential to make a full recovery – even those who have been struggling for a very long time.

I’ve written in past logs about the importance of clinician attitudes in treating eating disorders, and discussed examples of patients who were turned away after having “failed” numerous treatment programs, labeled as “chronic and severe” and essentially seen as lost causes. To me this seems like slapping a medical term over top of what is actually blame on the patient for not “recovering properly” (or “successfully” completing a treatment program). As Peggy says in her book, “the danger is that if a therapist blames an eating disorder victim or labels her a failure out of frustration or a sense of helplessness, the family and patient may still swallow those statements whole and without question. The attitude that eating disorders are ‘incurable’ becomes a self-fulfilling prophecy for the victim” (Claude-Pierre, 1998). My friend brought this issue up as well, when I asked her about stigma she has experienced in clinical settings. Her response was:

“There are several words that I think should be abolished when treating people with EDs…“Chronic” is one, and “Treatment Resistant” is another. This implies that there is a certain category of people with eating disorders who can never be completely well; that they will live with their ED until they eventually die from it. “Treatment resistant”, in my opinion, is a term that is used because healthcare professionals don’t fully understand what is going on in the patient’s mind. They are struggling with behaviors or “not participating in the treatment” because their mind will not allow them to accept or engage in it. Maybe it’s telling him/her that he/she doesn’t deserve it, or doesn’t deserve to live.”

Something that Peggy mentions several times in her book that I’ve rarely encountered in reading other research is the idea that EDs can be fully cured – and that victims can be fully well. Her absolute conviction about this must be incredibly comforting and in some ways motivating to her patients; much more so, I’d imagine, than a clinician who only half-heartedly believes that their patients are able to achieve wellness.

Another thing that I asked about was the still widely-held misconception that eating disorders are the result of a society that is obsessed with gaunt, unnaturally thin women – namely the modeling industry. In the two abnormal psychology classes I’ve taken, I was actually surprised at how little information there was in the text about the brain-based aspect of ED etiology, and how much talk there was of media, advertising and models (at least in the textbooks – one of  my profs actually skipped covering only the ED chapter in class).  My (beautiful) friend happens to be almost quite tall and actually worked as a freelance model for years in her teens and twenties. Here is what she had to say about this issue:

“My symptoms showed up during adolescence but they were just that – symptoms – of something underlying…my mindset. I sought out those types of activities…gymnastics, dance, modeling, because I wanted to channel my mindset of perfectionism and desire to achieve at a very high level and gain approval. I worked with many other models who did not have anorexia or bulimia – they didn’t share my mindset. They could lose 15 or 20 pounds for a show or shoot and then put it on again just as easily. It was just a job for them. For me, it was about self-destruction, and modeling was a way to hide that – “I have to… for work”. I hated myself, I hated the way I looked, and I was probably the most self-conscious model I knew.”

It’s easy to look at a model who is unusually tall and very thin and make the assumption that her appearance is unnatural and therefor she must be starving herself. But the truth is that some peoples’ bodies are just born to function that way, for whatever reason – high metabolism, genes, etc. Eating disorders go much deeper than the surface issue of models and magazines. Excuse me while I quote more of Peggy’s book; she describes it so well.

“If a connection exists between the cult of thinness and anorexia, it is far deeper than mere vanity. There is a difference between becoming thin for the sake of fitting into society’s expectations and becoming thinner and thinner for the sake of dying. […] Society’s emphasis on looks clouds the more important issue that children are dying because they are trying to achieve impossible standards of perfection. […] Rather than thinking of the supermodel syndrome as a cause of eating disorders, it is best to think of it as a possible trigger. Modeling is an area in which perfection seems attainable, one of the many venues for perfection (such as sports, academics, dance, and so on) that eating disorder victims will fit themselves into.” (Claude-Pierre, 1998).

And finally, my friend and I discussed the issue of what the important things are that more healthcare professionals (and families/friends of ED sufferers) should know in dealing with these illnesses. I know this post is getting long so I’ll get to the point here and just quote my friend, who makes some really effective points.

“Understand that there is a separation between the person – their actual self – and another mind, one that is all negative, all the time, and trying to destroy them. The person’s actions/behaviours aren’t them, so please don’t blame or make them feel badly about it. Their mind already beats them up all day long. This isn’t about young girls wanting to be models and choosing to go on diets. This is about something inside of their minds that is driving them to self-destruct. It may seem like it’s all about body image and food… but those are the symptoms of something else, underlying.”

“Also, it is important to know that it takes a nearly unbelievable amount of time, patience, and dedication to get someone completely well. It’s not a Monday to Friday, 9-5 thing. Our eating disorders don’t take a break at night and on weekends. You need to keep people safe, consistently, 24/7. People can actually be treated and if done properly – once – it is forever. I no longer believe in the word “relapse”. I only “relapsed” so many times in the past because I was never completely well. I hadn’t eliminated my negative mindset completely. Every single person with an eating disorder can become well, completely, under the proper circumstances.”

When I asked her specifically about what she would say in giving advice to parents, family members or friends wondering how to approach a loved one’s ED, she very succinctly summarized the important points:

“Love the person, unconditionally, get help as fast as possible. The earlier you can get a child or teen (or adult) proper help, the better. Keep the lines of communication open, in a non-judgmental, compassionate way. If the person is in danger, medically or psychiatrically, intervene immediately, keep them safe and protect them at all costs. Please do not comment on any aspect of a person’s appearance or weight. Their mind will likely construe it in a negative way, and no number – weight or size is ever good enough in their minds. Try to understand that what the person is doing is not really them. Above all, maintain hope and be positive and optimistic. Never, ever give up. If you don’t find satisfactory answers to the questions you ask, keep asking or keep seeking out solutions. There are many good people out there who want to help. If I had stopped trying different things after every “failed” hospitalization, treatment program or “relapse”, I would certainly not be here today.”

I am so grateful to her for opening herself up to this project so that I could use her words to “put a face” (albeit a blurry, anonymous one) to the issues I’ve been discussing all semester. I think it says a lot about Peggy’s program, too, that it can turn someone’s life around when they have already tried so many times to be well – a “last chance” was how my friend referred to her admission to Peggy’s clinic. Thank goodness there is a kind and loving soul out there who believes in the potential of the “lost causes” to be well. When it comes down to it, eating disorders are not terminal cancer – there is no definitive death sentence until people truly give up (or are given up on). As unpleasant, painful, and frustrating as recovery can be, it is always there as an option; it is never magically “off the table” after a doctor refers to someone as chronic. The important thing that is lost when something like that happens is the patient’s ability to see that there is a light at the end of that long tunnel. Taking away ED patients’ phone privileges in treatment is one thing – taking away their hope is quite another. Patients whose care-workers believe in their potential to be well have someone holding their hand on the journey towards the light – rather than casting a shadow in front of it.

““This is the weird aftermath, when it is not exactly over, and yet you have given it up. You go back and forth in your head, often, about giving it up. It’s hard to understand, when you are sitting there in your chair, having breakfast or whatever, that giving it up is stronger than holding on, that “letting yourself go” could mean you have succeeded rather than failed. You eat your goddamn Cheerios and bicker with the bitch in your head that keeps telling you you’re fat and weak: Shut up, you say, I’m busy, leave me alone. When she leaves you alone, there’s a silence and a solitude that will take some getting used to. You will miss her sometimes…There is, in the end, the letting go.”(Hornbacher, 1998).

References:

Darcy AM, Katz S, Fitzpatrick KK, Forsberg S, Utzinger L, & Lock J (2010). All better?

            How former anorexia nervosa patients define recovery and engaged in treatment.

European Eating Disorders Review: The Journal of the Eating Disorders

Association, 18 (4), 260-70 PMID: 20589765

Claude-Pierre, P. (1998). The secret language of eating disorders.

London: Doubleday.

Hornbacher, M. (1998). Wasted: a memoir of anorexia and bulimia. Harper Collins.

 

Awareness and understanding – how do you talk to someone with an ED?

When I started out with this project, I thought that I would focus predominantly on specific methods of treatment for eating disorders (mainly anorexia nervosa), and the comparisons between them – why some seem to work and others are less effective. What has ended up coming out of it is a sort of dual-focus on the treatment methods in conjunction with discussing the social stigma and lack of awareness that surrounds the issue of eating disorders. As I’ve come to understand better through reading and writing about it, I think discussing the important issues of myths/misconceptions and how to approach EDs in general are a necessary first step to discussing treatment – especially on PEI, where we have such a lack of resources and knowledge about EDs. Since we have no treatment centers here, or any advertised “place” to go if you’re dealing with EDs, I think the best first step to advocating for better (ahem, acceptable) treatment options is to address the topic itself on a general level with both the public and health professionals. In previous posts I’ve talked about the lack of accurate knowledge about the actual disorders themselves among health professionals; and I’m talking way before treatment knowledge here – I mean misunderstanding the nature of the illness and misjudging the patient’s level of “control” because of this. So I think what I’ve gleaned in large part from doing the research and writing that I’ve done up to this point, is that people need to know and understand more before there can be more widely available treatment options. It seems obvious what the solution to this problem is, but ironically, the solution is the one thing people seem most uncomfortable and sometimes unwilling to do: talk about it.

So this week I’ve read several articles that I found helpful for encouraging awareness and action amongst different populations of people, including parents, friends, fitness professionals and health professionals. Some of what I read talked about prevention (i.e. early recognition and intervention for EDs), and some focused on the appropriate ways to approach eating disorders (what to say if you’re a parent/friend, how to intervene as a fitness professional, and what is important for health professionals to know). I thought I’d try to include some of what I feel are important points.

The first article I’ll briefly mention is one I posted on Facebook for Eating Disorders Awareness Week, called “To the girl with an eating disorder at the gym”. It is written in the form of an anonymous letter from one gym-goer to another (the author is a journalist who is recovered from an ED herself) that essentially has one main point: I see that you are struggling. The reason I love this article/blog post (it’s short – read it if you have a couple of minutes) is because it brings to light not just the stigma but also the taboo that seems to prevent anyone from talking about eating disorders, even when it’s painfully obvious that someone around them is potentially very ill. The author in this case talks about how “no one will say this to your face”, partially because of what I’ve talked about before as a sort of silent awe or reverence for the supposed “self-discipline” that is assumed to go along with an underweight body (Konstantinovsky, 2012). The other thing I thought seemed to probably be the main reason for people’s inaction in bringing up the topic of EDs is the fact that we tell ourselves it’s none of our business, and in order to push away that twinge of guilt that we might be ignoring something really important, we try to tell ourselves it’s probably not really serious. For example:

“But they won’t tell you that. Because really, how could they? It’s personal, it’s private. Maybe it’s not even what they think it is. You probably just have a fast metabolism. Or you’re an athlete. You could just really love the endorphins.

 I know your secret. I had the same one. And there are others around you harbouring it too. But you don’t want to talk to them about it. You certainly don’t want to talk to me about it. You’re fine. If it were really so bad, you’d know it, you’d feel it. You feel great. Well, you feel okay. If it were out of hand, it would be obvious. People would know. People would say something to stop you.” (Konstantinovsky, 2012).

This brings to light an important dilemma: when is it ok to intervene – to ask questions that might break the assumed privacy barrier of people’s personal lives? Who is an appropriate person to do this? What if you’re a stranger? The only answer I can come up with for these questions is one that I hear emphasized in my various psych classes all the time– it depends. It depends on if you are a friend, family member, authority figure (teacher, etc.) or stranger, and it depends on the person with an eating disorder. If you do decide to be bold/courageous and ask if said person is ok (or however you would say it), the reaction you get could range from denial/rejection to gratitude.

After I shared this article, I received a message from my uncle who lives out west, telling me that it had resonated with him because of a woman who is a regular at his gym who is fairly obviously struggling with an ED. He said the article forced him to be honest with himself (he had been telling himself many of the excuses from the article excerpt above) and consider stepping out of his comfort zone and actually reaching out to her. In the end he decided that he would try to befriend her and get to know her a bit better, which might enable him to show concern in a way that would be better received by her (it’s easier to reject/walk away from a stranger than an acquaintance). It’s important to recognize that for the person with an ED, it may be just as difficult to initiate a conversation or ask for help as it is for you to bring it up. For some people, they “can have such low self-esteem that they simply don’t feel like they deserve help” (Hall, 2012). This, like other aspects of EDs, can seem hard to believe to people who have never experienced their self-esteem plummeting to such a low, but I can assure you – this is part of how the mindset works, and how it pulls sufferers down into the dangerous cycle. A very tangible (albeit shocking and extreme) example of this is in this video of a section of the documentary about Peggy Claude-Pierre’s clinic, where in the first 3 minutes one of their most critical patients is shown in the darkest moments of this specific turmoil. (http://www.youtube.com/watch?v=i7O3PFKlkS4)

In terms of how to talk to someone with an eating disorder, regardless of your relationship with that person, there are certain things that are really important to know. It might seem obvious (or maybe it doesn’t) that weight as a subject is really one you should avoid altogether (unless of course you are the clinician treating the ED). This is because of the internal mechanism of how an eating disordered mind works – pretty much anything you could say related to their weight can be either misinterpreted as a criticism or taken as a compliment when it wasn’t intended to be one. Saying “you’re looking too thin/starting to look sick” is often translated by the ED mindset into a compliment that only spurs them onward, and an intended compliment such as “you’re looking great/you look healthy” is often interpreted as “I’m getting too fat/people think I’m fat now” (Lee, 2013).

In Peggy Claude-Pierre’s book, which I’ve done a couple of logs about, she has a section that discusses how to interact with and talk to a loved one with an eating disorder (in her book it is aimed at parents of children with eating disorders, but most of the advice generalizes to friends/doctors, etc.). A predominant theme in her treatment method is compassion and unconditional love – which she says counteracts the harsh voice of the patients’ negative mind. I thought this point of hers was best represented in something she said to an interviewer in a section of the documentary on her clinic. She says:

            “if you can imagine a dog who’s wounded, or an animal that’s been kicked, I mean the first thing you do, the natural instinct of any of us, is to pick the animal up and to hold it until it feels better. But somehow we don’t feel that right with human beings. It’s interesting isn’t it?” (20/20, 1994).

            As with most things I’ve quoted from Peggy, she makes a point that seems obvious once it’s been said, but I think many of us wouldn’t have thought of it had she not said it. And if you go from her statement above, to thinking about the “tough love” approach that many hospitals take – by making the patients’ lives unpleasant (removing privileges/activities) until they agree to eat – it really does seem so counterintuitive to the human condition. Taking away the “privilege” of a phone call with family, or visiting hours, essentially is a behavioral way of making love and connection contingent on eating. This might be effective if an eating disorder were similar in any way to a conduct disorder, where there is a stronger element of choice and control over the “negative” (or unwanted) behavior; in these cases the contingencies/rewards are in place to reinforce the subject to make the better choice of behavior. You have to go all the way back to the neurobiological research that says EDs have a very minimal element of “choice” and are brain-based illnesses in order to understand this line of thinking as to why purely behavioral treatments like this will continue to fail ED patients. Peggy sums it up nicely, I think, by explaining that “programs based on behavior modification are generally ineffective, since the behavior they are designed to address is merely a symptom of the underlying condition, not the problem itself” (Claude-Pierre, 1998). Starving, restricting, bingeing, purging, and other such eating disordered behaviors are the physical manifestation of an underlying mental health problem. Addressing only the eating behaviors and calling it treatment is akin to putting a Band-Aid on a broken ankle.

For my next post I am hoping to have conducted an interview with a friend of mine who is at Peggy Claude-Pierre’s new clinic, Ceghona Retreat, in Portugal. I’m so interested to hear about her experiences there and more importantly, her perspective on the various methods of treatment she has experienced and what she has found effective (as well as ineffective). I am very intrigued by patient perspective when it comes to the treatment of eating disorders, and what sorts of unique insight that can bring to the ongoing search for effective, evidence-based treatment methods.

References:

20/20. (Producer) (1994). Documentary on anorexia clinic montreux [Web]. Retrieved

from http://www.youtube.com/watch?v=OFCaxDfGupw

Claude-Pierre, P. (1998). The secret language of eating disorders.

London: Doubleday.

Hall, L. (2012, October 24). How to talk to someone with an eating disorder. Retrieved

from http://www.eatingdisordersonline.com/articles/eating-disorders/how-to-talk-

to-someone-with-an-eating-disorder

Konstantinovsky , M. (2012, December 16). [Web log message]. Retrieved from

To the Girl With an Eating Disorder at the Gym

Lee, Y. (2013, January 10). Friends and family dealing with an eating disorder.

Retrieved from http://www.eatingdisorderhope.com/treatment-for-eating-

disorders/family-role/how-to-talk-about-eating-disorders

Medical Negligence and lack of training in treating victims of Eating Disorders

In the past while I’ve read a lot of interesting articles that were relevant to eating disorder treatment – all of which were full of valuable information. One of them, however, really stuck out as important to discuss, since it explores a topic I’ve touched on before – the dangers of medical and mental health professionals being uneducated or misinformed about eating disorders. It is titled “Extreme Medical Negligence: Failure to Feed Patients with Anorexia Nervosa” (the source is a really awesome website called “The Science of Eating Disorders”, which is run by graduate students who review recent research findings in this field and sort of take them apart and highlight main points and findings in more everyday language – AKA non-academic-speak, so the facts are more accessible to the general public). What I like most about this site in particular is that it discusses and draws its information from peer reviewed journal articles, so I know the sources are credible and cite-able.

Part of what inspired me to explore this topic for project was the incredible lack of eating disorder treatment options on PEI (and the Maritimes in general). More specifically, though, I think it’s important to note the fact that there are no health professionals here have specialized knowledge on the intricacies of how eating disorders are effectively treated. This article is so pertinent to this particular issue because it talks about why it is important to have professionals who have experience and specialized training for EDs, and what can go (sometimes horribly) wrong when ED patients end up in the hands of someone who doesn’t understand the illness.

It starts off by describing 2 fairly shocking situations (both of which actually happened, as documented in the original study) involving females in their late twenties who had been discharged from residential treatment facilities but were having problems feeling faint, weak and/or nauseated (these are separate cases). Both women went to their local ER and received thoroughly inadequate treatment – to the extent that one of them was admitted for 6 days and didn’t receive any food during her stay there, despite low blood sugar levels (I actually had trouble believing this for a minute). Obviously she was readmitted within a day or two of being discharged. Now granted these are pretty extreme cases of mistreatment, but from the other accounts I’ve read throughout this project, they’re really not all that far off from what happens all the time to eating disorder patients in hospital ERs. It doesn’t always involve not feeding the patients – often it is a lack of compassion or all-out disdainful attitude (based on a misconception about what EDs are), or simply discharging them/turning them away when they need help. In fact, in the video I talked about a few logs ago, Chris Thornton (a psychologist specializing in EDs) actually said “a good way to get discharged from a hospital, is tell them you have an eating disorder – they’ll let you go out the door” (Thornton, 2012). So the obvious next question seems to be: why? Why are patients with eating disorders seemingly on the bad end of the healthcare system on such a regular basis?

The authors of the original study compiled a list of possible reasons for the medical negligence in these sorts of cases. The list included, but was not limited to:

• “Lacking adequate knowledge, training, or skills.”
• “Misunderstanding the nature of EDs, believing patients caused their own problems, solution: ‘just eat’”
• “Believing that anorexia nervosa is not a ‘real’ illness and thus doesn’t deserve ‘real’ treatment”
• “Lacking quality control or performance measures for treating ED patients (i.e. no assessment of food intake or weight gain).”
• “Avoiding patients because of personal issues with food or weight.” (Powers &Cloak, 2013).

They also mentioned a few that were interesting and kind of surprising to me, each of which referred to a phenomenon called “countertransference”, which refers generally to a clinician’s emotional entanglement with a client. These usually involved some degree of envy of the patients’ thinness or “control” of food, or becoming “unable to see patients as ill because of similarities to own personality (i.e. obsessive-compulsive traits, need to please)” (Powers & Cloak, 2013). The lack of experience and training was an aspect of treatment deficiency that had occurred to me often, but this notion of envy or something similar to that was an unpleasant surprise, I have to say – it is reminiscent of the “ick factor” of pro-ana websites, where there is some idea of glamour attached to this debilitating illness. I realize that doctors are only human, but it is still a little scary to think of that as a factor in why so many people with EDs receive inadequate or inappropriate treatment in hospitals.

But here is the real meat of the discussion: getting down to statistics, it was found that 42% of primary care physicians felt they didn’t have the skills to screen for EDs, and 72% “were uncertain about how to manage patients with EDs” (Powers & Cloak, 2013). That is huge. If you think of it in terms of the fact that 15% of the population suffer from an eating disorder (not limited to anorexia – this includes bulimia, binge eating, and EDNOS) , it’s a pretty prevalent illness for physicians to be so uninformed and uncertain about. Of course, this article also referred to a problem that I’ve read and heard about constantly throughout my research: the perceptions of medical staff being similar to the general public in that patients with anorexia are “not really sick”, but are just attention-seeking, vain, and selfish. I’m not going to go too far into this issue since I’ve talked about it before, but in terms of a solution for it, it seems to me that the only answer is awareness. Bringing in specialists with extensive experience to give seminars to more general practitioners about what eating disorders truly look and feel like, and giving real-life, tangible examples of the fact that they are not, in fact, about attention, vanity, or attention-seeking, but rather extraordinarily frustrating, all-encompassing, and life-altering diseases. Even if general practitioners don’t have specific training in eating disorder treatment, I think it would possibly be just as important for them to have had some form of intensive information session (i.e. real case study examples from credible medical professionals) that gives them real reasons not to believe the myths and stereotypes that are still so prevalent.

Something that intrigued me was mentioned near the end – the element of frustration when it comes to attempting to treat something that is so notoriously treatment resistant. In my posts I focus on the aspects of treatment that go wrong (and right) in order to explore how to approach treatment more effectively – but I haven’t talked much about how ridiculously frustrating these patients are to treat because of the mental processes that result in them clinging to their illness and being reluctant to recover. This is a post in and of itself, because if you don’t fully explain that aspect of it, it’s pretty easy to see it as the patients choosing or wanting their illness, when in fact it is much much more complicated than that. However, I feel like I should at least give credit to anyone faced with the arduous task of treating these disorders (especially if said person isn’t properly trained to do so), because they certainly deserve their reputation as one of the most frustrating to treat. The authors described it well when they said “we are of course anxious to feed those who take insufficient food, but if frustrated, our anxiety quickly turns to hostility at what seems to be an unnecessary, self-imposed disease” (Powers & Cloak, 2013).

The very last part of this article was another list, this time of what the original authors had suggested in terms of what can be done to avoid serious medical errors in future ED treatment. I liked this in particular because I’ve been considering some form of brochure or awareness booklet as my final part of this project – one that, if I do it properly, might be something I could sort of strategically drop off in a few places (doctors’ offices, public health, etc.). A couple of my favorites from this list were:

• “Physicians can develop a short, concise, “best practice” list for medical care of patients with EDs in collaboration with ER, internal, and pediatric doctors, as well as psychiatrists.”
• “Physicians and nurses should provide continuing education to colleagues about ED management, specifically addressing counter-transference issues and tips for dealing with difficult situations”
• “Patients (and/or patients’ families/friends) need to be their own advocates. Clinicians need to be their own advocates. Clinicians need to provide patients with the ability to voice their own concerns and needs.” (Powers & Cloak, 2013). (YES!! Because how often do you really think they ask the patients about their opinions? I’m guessing probably not that often.)

There were other great points too; obviously there is the issue of the fact that there is a lack of understanding and awareness in two very different populations: the general public and those in the medical profession. Since only one of those two populations is qualified to provide any treatment, I think the forms of awareness that are needed are certainly different in each respect. However, the overall message is still the same: progress can only be made here if the way EDs are seen undergoes a shift from “choice”, “not serious”, and “attention-seeking” to “brain-based”, “life-threatening” and “unwanted suffering”. That seems to be the logical first step before specific medical and hospital problems and dysfunctions can be properly addressed.

References

Powers, P., & Cloak, N. (2013). Failure to Feed Patients With Anorexia Nervosa

and Other Perils and Perplexities in the Medical Care of Eating Disorder

Patients Eating Disorders, 21 (1), 81-89

DOI: 10.1080/10640266.2013.741994

Deep Brain Stimulation in the treatment of “Chronic and Severe” Anorexia

Recently, a friend of mine posted a link to my facebook wall about a new treatment that is in the early stages of development here in Canada! Dr. Blair Woodside, the medical director of the eating disorders program at Toronto General Hospital, is the head of the project, which involves a procedure called “Deep Brain Stimulation” for patients with chronic and severe anorexia. The study was a small one, involving just 6 women who have all struggled with anorexia for a very long time and been through extensive amounts of different treatments – none of which have worked (this is called “treatment-refractory anorexia”). The surgery itself involves implanting small, pacemaker-like devices into the patients’ brains, and is considered minimally invasive (though in my opinion it’s hard to imagine anything that involves brain surgery being minimally invasive! As a non-medical professional anyway!). These little electrodes are then connected with tiny wires to a pacemaker-like device in the upper chest, which is what controls the level of stimulation to the brain (which can also be turned off if necessary).

There was both an article and a video for this story, and while this study is small and one of the first on this specific topic, the results were pretty significant. Remember that these are women who have been through multiple intensive treatment programs with no success – three of the six women in question achieved and maintained a body mass index “greater than their historical level” after having the DBS device implanted (Dakin, 2013). To me this says something huge about the level to which the brain and biology are factors in serious eating disorders – these women, even after encountering little to no success in conventional treatment programs, are finally finding balance and happiness in life. One woman, whose name is Kim Rollins, was so physically sick from her eating disorder that she had suffered a heart attack at age 28, repeatedly broken the bones in her legs and feet while working out (as a result of early-onset osteoporosis), and also had two strokes. After the surgery, her mood and anxiety symptoms improved and the was able to reach and maintain a normal weight, finally responding to hospital treatment (that had not worked for her previously). She refers to her new state of being as her mind being calmer, and her body being less fidgety (which seems to refer mostly to the anxiety that she had so much of previously). In the video segment, the doctor at the head of the project emphasized that DBS as a treatment for anorexia is intended to be a last resort – with those patients for whom it may be their last chance at getting well. He explains that it does not involve flipping some sort of inner switch that also cures the important underlying issues of anorexia nervosa, and that even after the procedure the patients must continue treatment to address these issues. It seems that what DBS actually does is lower the resistance of patients who are highly treatment-refractory, which allows them to have greater success with the treatments that have failed them in the past.

In terms of exactly how the procedure helps and what it specifically does, it apparently targets a bundle of white matter below the corpus callosum – the bundle of nerve fibers that connect the two hemispheres of the brain. This article wasn’t super-informative about the more detailed description of exactly how deep brain stimulation actually works, so I found another article about the same study, in the Toronto Star online. This article explained that the electrodes “deliver a constant, cycling shock to the subcallosal cingulate — an area known to be involved in depression and anxiety”

(Alamenciak, 2013). Apparently the science of how exactly the process works is still a mystery to medical professionals – though deep brain stimulation has been used already in the treatment of depression, Parkinson’s disease, and other movement-associated disorders.

Since this treatment is so new, they are still exploring different side-effects and it’s overall safety to potential patients. To me this seems like it could be a pretty sensitive issue with patients with extreme anorexia, since their bodies are just so incredibly fragile after enduring years of abuse and malnutrition – it doesn’t take much to cause pretty serious adverse medical situations in patients whose bodies have been teetering on the edge of a cliff, so to speak, for a long time. Even refeeding, which ends up being a central part of any treatment for anorexia, needs to be approached with extreme caution because after a long period of starvation and malnutrition, the body can go into shock if food is reintroduced too quickly, which can result in sudden death. The side effects that were experienced in this study were pain, nausea, panic attacks and an air embolus, though the overall results of the study indicated that the treatment is safe. I can imagine that determining whether those issues were side effects of the DBS or of the anorexia itself  was difficult and cloudy – there is a similar issue in differentiating between side effects of the actual disorder of anorexia and the side effects of starvation itself. It’s hard to separate the two things when they are so intertwined.

Overall I thought this innovation in treatment research was really interesting – especially since it originated in Canada! It’s nice to know that there are people looking into treatment not only for the largest percentage of the eating disordered population, but also the outliers like these women – people who are probably in the top 5% as severity goes in the case of anorexia. In some articles and personal blogs I’ve read, these women (and men) are all too often given up on, with a big “chronic, treatment-resistant” label slapped on their medical charts and no one willing to try again to help them get well. I actually read one woman’s blog where she described a doctor who had referred to her as “hopeless” and essentially talked about her future as a waiting game to see at what point she would inevitably die from her illness. She was denied a bed in a treatment facility because she was “too sick” and given that she seemed so likely to be one of the 1 in 5 who eventually die from their disorder, they didn’t want to waste the spot on someone like her. This immediately made me think of cancer patients – aren’t they offered the option of chemo and radiation even if they are in the final stages of their illness? They are given the decision to continue to fight and receive treatment even when it is certain that they are terminal, because they deserve the right to as much time left on earth as they can get. It doesn’t seem right that patients with anorexia who are likely to die from their disease (but also might not!!) are turned away so readily. That’s a lack of compassion like I’ve never heard of before in our medical system.

Both articles highlighted the fact that much is still unknown about the mechanism of DBS and the fact that more studies need to be done in order to get a more comprehensive idea of how it works and how significant its effects are on a larger sample size. The authors did emphasize the encouraging nature of the findings, though, because they “seemed to point to a genuine therapeutic effect rather than a placebo or hunger-increasing effect” (Dakin, 2013). This seems pretty important, given that simply increasing hunger without a therapeutic effect (or an increased ability to mentally deal with the newly increased hunger) could lead to a relapse because the patient might not be able to handle the fact that her body is essentially ahead of her brain all of a sudden.

I liked reading about this because it is the first treatment method I’ve come across in my research that directly addressed the brain dysfunction associated with anorexia. Even though it’s a last-resort treatment, it is still a profound discovery – perhaps it will lead to more minor brain-associated treatments for a wider range of patients (not just the most chronic or extreme). Or maybe (and this would be huge) the mortality rate of anorexia will start to decline – since it is often the more chronic and extreme cases of anorexia that result in death, largely due to the patients not having found a treatment that worked for them. Hopefully a number of years from now this will have expanded into a widely accepted treatment method that can help save the victims that had previously been labeled un-saveable.

 

 

References

Dakin, P. (2013, March 6). Brain ‘pacemakers’ promising for anorexia treatment.

Retrieved from http://www.cbc.ca/news/health/story/2013/03/06/anorexia-deep-

brain-stimulation-implants.html

 

Alamenciak, T. (2013, March 6). Toronto treatment offers hope to late-stage chronic

anorexics. The Toronto Sun. Retrieved from

http://www.thestar.com/life/health_wellness/2013/03/06/toronto_treatment_offers

_hope_to_latestage_chronic_anorexics.html

More on Peggy Claude-Pierre

This week I’ve been continuing to read Peggy Claude-Pierre’s book, “The Secret Language of Eating Disorders”. In my last post I gave a fairly in-depth description of Peggy’s central philosophy with regards to eating disorders in general, as well as her background – this time I’m looking more specifically at her approaches to treatment. One of the chapters in her book is dedicated to explaining the steps that someone in the role of a caregiver or clinician needs to take in order to help the patient reverse their “negative mind”. Jumping briefly back to last week, the negative mind is central in Peggy’s own theory of the etiology of eating disorders – in short, it is the driving force behind the illness that, without treatment, slowly consumes the patient’s actual mind (or the person they would be without the eating disorder). This chapter was very articulate and, in my opinion, laid a really great framework for anyone who is new to understanding eating disorders – either as a family member or friend of a sufferer or a clinician with little experience in this domain.

There are several different headings in this chapter, so I will discuss the ones that I thought were the most important or influential. The heading for the first step is “recognize that the patient is desperate for help”. This is so important for the doctor or clinician to realize because it can help to rectify the misconception that people with eating disorders freely choose their illnesses (or worse, “lifestyles”). Again it comes back to the dual-mindset that the eating disorder imposes on the patient – part of them feels trapped in their illness, and is afraid to let go of what they feel to be their safety net or method of “control”. Still another part of them recognizes their incredible isolation from their friends, family and eventually most of society, and feels desperate and hopeless – this part is the one that longs to be well and recovered. Peggy mentions at the end of this section that because of the secretive nature of eating disorders, many victims find it hard to reach out – therefor, “we must be attuned to their muted cries for help if they are to be rescued” (Claude-Pierre, 1997).

The next heading is “the numbers game”, which addresses the importance of leaving specific numbers – specifically weight – out of discussions with patients. Often in hospitals where patients with eating disorders are aware of their daily weights and “target weight” (aka the weight they are required to reach before being allowed to return home), patients will appease their doctors by attaining the target weight, so that they can be released and get back down to their previous weight. This focus on the numbers and weight as the ultimate treatment goal fails to address the mindset that brought about the illness in the first place, and therefor when the patient is released from hospital, they are still trapped in an eating disordered mindset. In the early 1990’s, Peggy’s clinic was one of the first to employ the now widely-used practice of weighing patients backwards, so that they are unaware of the specifics of their weight gain. Another aspect of the weight gain process that Peggy addresses in a way that I personally believe is a huge component of her method’s success rate is her method of refeeding, or encouraging weight gain by teaching patients to eat again. She describes it best when she says:

“Smaller portions at one sitting are less threatening than three large meals a day. If the patient finishes a meal and stops eating before she feels full, she is less inclined to feel the need to purge or exercise. We are aiming for a slow, steady process that encourages gradual weight gain for physical safety and physiological balance. Force-feeding huge quantities of calories to a patient with an eating disorder is extremely unkind. Ultimately such a strategy is counterproductive and physiologically dangerous. It is gentler to body and soul to encourage slow, safe weight gain that allows the patient dignity and time to adjust emotionally.” (Claude-Pierre, 1997).

            I’ve watched countless documentaries and read many articles about both hospital and residential treatment programs where anorexic patients (many of whom come into the program eating very little solid food) are immediately thrust into a daily routine of weight gain-oriented eating – sometimes up to 3000 calories a day. What an incredibly fear-inducing method of reintroducing these people to food. To me this seems almost ironic, given that the eventual goal is for anorexic patients to see food as a positive and necessary element in their lives, something that nourishes and heals their bodies. A food-related component of anorexia that is part of what dominates the fear element is a discomfort and intolerance of the feeling of fullness. When a person has gradually reduced their DAILY caloric intake to somewhere below 600 calories per day, increasing that to 1200 can be physically very uncomfortable – let alone 3000 calories. Peggy’s gradual approach seems exponentially more humane and compassionate, not to mention less aversive to the patients themselves. It makes sense that after this approach, these individuals are able to gradually feel more comfortable with their increased food intake and subsequently, increased weight.

Another heading in this chapter is “distraction”. This is one that is probably very easily overlooked if the practitioner hasn’t had personal experience with an eating disorder, because it is not something that people suffering from anorexia always consciously realize to be important. To quote from the book”

“The goal of distraction is to keep a victim’s attention external, to prevent her from disappearing inside her negative mind. Eating is such a frightening time for anorexics, because the negative mind will come out in full force. Immediately after meals, victims will often feel extremely anxious. This is when distraction is most essential.” (Claude-Pierre, 1997).

            She goes on to explain that in her clinic, she has found that encouraging external focus and concentration keeps the person focused, and that is what can divert them from their anxieties that focus negatively on the food they’ve just consumed. Peggy mentions that the first twenty minutes after eating can be the most difficult and agitated period for the patient, and that the care-workers use techniques like conversation, board games, Ping-Pong, humor, art, writing and educational outlets to prevent them from getting caught up in negative self-talk. To me, this is one of the stand-out differences between Peggy’s program and the many hospital programs – especially if the hospital program is forcing unusually large portions of food on these patients. Clearly there is a high level of anxiety associated with the thought and act of consuming food, especially more food than the individual is accustomed to. The idea that they should be capable of dealing with the after-effects of an enormous meal without help to process what has just occurred seems, frankly, silly. Speaking now from personal experience, I can tell you that one is the biggest deterrents from attempting or achieving recovery is the way that you feel after eating, and what goes on inside your head at that point. To have someone there who understands this and is actively keeping you from engaging in the illness and disordered thoughts just seems so much more effective than leaving you to attempt that feat on your own.

There were several other important points in this chapter pertaining to initial treatment, but the ones I’ve discussed are the more “big-picture” points that I thought were both important and potentially overlooked in some programs. There is another chapter in this book called “The Five Stages of Treatment” which is also very interesting. The reason I’m spending so much time on this particular method is that it’s the first one I’ve found that takes into account so many aspects of how the patient feels, and how to make the difficult process of recovery as comfortable and achievable as possible. Given that it is pretty widely acknowledged that eating disorders are one of the most difficult psychiatric illnesses to treat, it seems obvious that successful treatment might take a while (reversing patterns that are very deeply engrained in the patients’ lives). While Peggy’s gentler, more gradual approach does take more time than a hospitalized treatment, if it is actually lasting and effective in the long-term it seems to me that it’s worth the extra time and effort.

Peggy Claude-Pierre – true empathy and understanding in treatment of Eating Disorders

     This week my learning log is going to focus on the real inspiration behind my curiosity project – an approach that I personally feel is revolutionary in the treatment of eating disorders, developed by a woman named Peggy Claude-Pierre, who I have had the good fortune to become acquainted with via the internet. Just to give some brief background information about Peggy, in the early 90’s she had a small residential clinic for eating disorders in BC called “Montreux Clinic”. She started it after a very difficult personal experience with anorexia when both of her daughters became extremely ill with the disorder, one after the other. Due to the lack of professional help where they lived (and being turned away from hospitals by doctors who told her that her daughter was either “too sick to treat” or would never recover), Peggy took it upon herself to find a way to help her daughters. She describes this journey in the first section of her book, “The Secret Language of Eating Disorders”, and without recounting the whole story, I’ll just say that through an incredible amount of time, patience and compassion, she slowly and painstakingly walked her daughters through their respective stages of recovery.

     Montreux clinic became renown for its incredible success; in fact, it was almost unmatched in success rate – the vast majority of the critically ill patients who were treated there achieved full recoveries. However, Peggy was criticized by some practitioners in the medical profession because she only held a Bachelor level degree in psychology. Now I know that that sounds like a red flag – but as someone who has dealt with a fair number of “professionals” while seeking eating disorder treatment, I am now a firm believer that the number of degrees after your name is not always a measure of your competence. There are numerous mental health professionals in the world with masters or doctorate degrees who would be completely ineffective at helping anorexic patients – because it requires specific understanding and experience. If you haven’t lived with the illness yourself, it can be incredibly difficult to really understand (and understanding how the mind works for these patients seems essential in helping them change the workings of their minds). It makes sense then that if you don’t have personal experience in living it, the only way to learn and understand how it works and how to help is by gaining experience working with and helping these specific patients. For me, reading Peggy’s book was an eye-opening experience that solidified in my mind that this woman is a pioneer in this field and it comes from her incredible understanding of how the word works in the mind of someone with anorexia. I have never in my life heard someone who didn’t at some point have an eating disorder themselves say the things she says in her book – things that I would never have thought someone could figure out or understand if it hadn’t been happening in their own head. Here I need to clarify again that I’ve read a lot of articles and books on this topic even before this project – and no one who wrote from an outside perspective that I’ve seen has ever come close to her depth of understanding. For example, when describing the struggle with one of her daughters, she says a couple of very insightful things:

“After a while, Nikki’s negative thought pattern, though cunning, became predictable. And so I began to trick what I had come to see as ‘the mind below the actual mind’. I realized Nikki could not allow herself to eat if she had a plate of food in front of her, so I would take her out to dinner and order for myself. […] I would cut chicken, her favourite, into small pieces and put them on a side plate. I was not admitting to her negative mind that food was in front of her. It was ‘mine’, and she did not have to take responsibility for it. I would look the other way as she slipped tiny pieces into her mouth. Slowly, ever so slowly, I was feeding her.” (Claude-Pierre, 1998).

            “I knew she was not allowed to say she was hungry ever, so I would say I was hungry. We ate six times a day. Slowly, slowly, I brought her back to health.” (Claude-Pierre, 1998).

      After several doctors saw her success with her daughters and knew her to be a certified counselor, they started referring patients to her. As she gained international recognition (on the Oprah show among other coverage of her treatment program) sufferers began to write to her and correspond about their own struggles, which she read and treated as a way to further understand the inner workings of eating disorders. Peggy ultimately developed a sort of theory of her own about the etiology of eating disorder works, which she calls “Confirmed Negativity Condition” (CNC). This refers to the underlying problem at a thought-process level of which the eating disorder is a symptom. She refers to what people with anorexia often speak of as a “voice in their heads” as the Negative Mind. Here is a brief description:

            “People with eating disorders are at war with themselves. They are of two minds. The negative mind is totally powerful when the symptoms of the eating disorder are present. What may have begun as doubting thoughts, indecisiveness, or mild self-criticism intensifies to form an autonomous voice. It is tyrannical, hypercritical, destructive and despair-confirming”. (Claude-Pierre, 1998).

             And so she believes that this negative mind functions like a parasite that attempts to consume the “actual mind”, which is who the patient would have been if Confirmed Negativity Condition hadn’t taken hold. Depending on your personal thoughts or theories on what causes eating disorders, this could sound legitimate or a little strange to you – but I personally think it’s pretty spot-on. Generally if you talk to someone who has suffered from a serious eating disorder, he or she will tell you that the further you fall into your illness, the more the negative aspects of your eating disordered mind consumes you – similar to the way that Peggy’s theory describes it. Later on in her book, she goes into a more specific description of how the actual treatment she developed for her patients in the clinic works, and what its core values and practices involve. I’m going to go into further detail on that in my next learning log, since it’s a pretty interesting method of treatment that has, again, had an incredibly high rate of success. I also have a friend who is actually a patient right now in Peggy’s current clinic in Portugal, who has agreed to answer some questions for me about why she feels this is a treatment that is finally working for her (she has been through many inpatient facilities in Canada and is now in her early 30’s). I’m really looking forward to the next steps in this project! I’m just going to finish off here with one more quote from Peggy’s book that I thought was profound.

 

            “One of the most tragic facts of eating disorders is that its victims become receptacles for society’s inadvertent abuse. They are accused of noncompliance when they have failed a hospital program. Rarely do we hear that a system has not worked for them; rather we are told that they have not worked for the system.” (Claude-Pierre, 1998).

 

References

Claude-Pierre, P. (1998). The secret language of eating disorders.

            London: Doubleday.

 

            

Family Based Treatment – The Maudsley Approach

This post will focus on a specific method of Family-Based Treatment (FBT), that has been shown to be highly effective in treating eating disorders in children and adolescents. This was my second write-up for my project on ED treatment, early on in the process.

Since I’ve done a lot of my own reading and research into the topic of eating disorders, I have a pretty good foundational knowledge of the basics in terms of diagnostics, statistics, and some general approaches to treatment. I have a couple of books that I have read and a couple that I’m currently in the process of reading that I think will be very helpful to me in this project. The first of the two that I’m reading now is called “Brave Girl Eating”, written by Harriet Brown, and it recounts her family’s experience with her oldest daughter’s battle with anorexia. The reason that this book in particular is useful for my purposes is that the treatment method this family ended up choosing for their daughter wasn’t the conventional hospitalization method – rather, they opted for a somewhat newer method called “The Maudsley Approach”. The Maudsley approach is a family-based, out-patient treatment that relies heavily on the parents involvement in a child or adolescent’s recovery process. Because this method is family-centered, it’s really geared toward children and adolescents with eating disorders, since most adults aren’t in a living situation where this kind of treatment would be possible. However, given the rise of eating disorders in younger children in recent years, I think this is still a good treatment method for me to explore, especially since its initial success rates seem to he very high.

A high priority in the Maudsley approach is initial weight restoration, since cognitive function is impaired when the brain is starving, and therefor psychological recovery can be difficult to attempt when a patient is critically underweight. However, rather than separating the child from their family and putting them in a hospital to restore their weight, this approach puts the bulk of that responsibility in the hands of the parent in the patient’s home setting, in order to eventually hand that responsibility back to the child when they are ready to take it on. A clear benefit to this in my opinion is that the person suffering from the eating disorder learns to cope with recovery and eating in their natural, every day environment instead of in a hospital setting. I’ve read a lot of literature that suggests that part of the reason that anorexia has such a high relapse rate after hospital treatment is because the patients only learn how to manage eating in the artificial and supervised environment of a clinic – once they get back home they are  ill-equipped to resist falling back into old habits, especially since they are suddenly back in the environment in which they’re used to practicing eating disordered behaviors.

I should note that this treatment method isn’t done without professional help – the family is under the supervision and advisement of a therapist specializing in this approach, and there are regular therapy sessions both for the entire family and for the patient individually. There are three phases to the Maudsley approach: phase one is “Weight Restoration”, phase two is “Returning control over eating to the adolescent”, and phase three is “Establishing healthy adolescent identity”. I went to the website that Harriet Brown set up after publishing her book, called “Maudsleyparents.org”, which is information and support for families who have been through or are going through this process with their children. It had a lot of great information about the details of the phases, and some really interesting testimonials and stories of experience from various families. I was especially encouraged in reading the section that describes the approach to the weight restoration phase of treatment, since that is often the most challenging part of recovery for both the person suffering from the eating disorder and everyone around them who is trying to help. There were a couple of things that stuck out as incredibly important to me that this method has a great approach to – I’ll quote from the website because their description is lovely:

“The way in which the parents go about this difficult but delicate task does not differ much in terms of the key principles and steps that a competent inpatient nursing team would follow. That is, an expression of sympathy and understanding by the parents with their adolescent’s predicament of being ambivalent about this debilitating eating disorder, while at the same time being verbally persistent in their expectation that starvation is not an option.” (www.maudsleyparents.org)

 

So while the goal and the framework (of increasing food intake and weight) are the same as hospitalization, there is an important acknowledgement here of empathizing with the patient that, I think, is incredibly important. One more quote that stood out was:

“Throughout, the role of the therapist is to model to the parents an uncritical stance toward the adolescent – the Maudsley Approach adheres to the tenet that the adolescent is not to blame for the challenging eating disorder behaviors, but rather that these symptoms are mostly outside of the adolescent’s control (externalizing the illness).” (www.maudsleyparents.org)

 

Increasing food intake, relinquishing control, and regaining weight are incredibly difficult, uncomfortable and painful for people suffering from anorexia. The difference between being served a plate of food and told only that you’ll lose privileges if you don’t eat it (this happens in some hospitals) is entirely different from being served that same plate and getting a pat on the back and hearing “this must be so difficult for you, I’m really proud of how well you’re doing”. Because of the stigma that is still so prominently attached to eating disorders, I think a lot of people who deal with them have some degree of assumption that “outsiders” think they are doing it on purpose or for attention. In reality, their minds are playing tricks on them and they wage constant war inside their own heads, against themselves – imagine how exhausting it would be for that to take up most of the room inside your head. The importance of parents emphasizing their understanding that the child is not doing this on purpose seems like a way for them to forge an emotional connection to their child, rather than potentially putting up a wall between them (which can happen if the parent mistakenly blames the child for their eating behaviors).  From what I’ve read so far about this approach to treatment, it seems to have a lot of positive and progressive elements to it. The one thing that sticks out to me as unfortunate is that it’s really only functional for patients who are young enough to still live at home with their parents. I’m really enjoying the book by Harriet Brown so far though, and looking forward to finishing it!