This is a follow-up to my last post on what I think can be improved in how we talk about eating disorders in the media and in ED communities. If you haven’t read my last post, I strongly recommend doing so before reading this one. My focus in this post will be on what individuals with a history of EDs and ED organizations can do to improve how eating disorders are perceived by the general public.
(Sidenote on my last post: I feel I didn’t emphasize enough that I used Emma Woolf’s quote as an example and a starting point. I’m confident I’ve made the same blunders that I am now speaking about. It is okay. I think the important thing is to think about our future actions, as opposed to dwelling on the past. My goal isn’t to single anyone out. Woolf is not the first, the last, or the only person to have said things of that nature–her quote was just on my mind since I saw it just a few days ago on tumblr.)
FIRST, FOR THOSE OF US WITH ED HISTORIES, this is what I think we should be AWARE of when we are speaking up about EATING DISORDERS TO THE PUBLIC.
This isn’t a comprehensive list–if you do feel I’m missing something important, please leave a comment! (I love comments.)
1. Often, we talk about how little we ate, how little we weighed (and share a photo), or how often we binged and/or purged at our worst.
(I’m not off the hook, I’ve done this too.) Think hard about why you are doing this. Is it relevant? Is it necessary? What’s the purpose of the information? It can do more harm than good.
I don’t mean that it can trigger someone (it can, but that’s not what I’m getting at here).
- It can send the wrong message to sufferers that (1) they are not sick enough, (2) that they don’t deserve treatment, or worse (3) that they are not going to face the medical complications because they eat more, weight more, or binge/purge less.
- It can send the wrong message to the public that someone with a “real” eating disorder eats x amount of calories, or weights x amount of pounds. If not, their eating disorder isn’t real, they are exaggerating or seeking attention.
- It can send a wrong message to doctors, nurses, and healthcare professionals about what patients with EDs “look like” (ie, what their symptoms/behaviours are).
I think when people write about numbers or frequencies of behaviours, they do so, at least in part, out of insecurity. In the past, when I’ve used numbers in relation to my ED, it was often (but not always) because I was insecure about the validity of eating disorder–I felt I had to prove that I really did have one. Believe me, I know I look healthy now, but I really was sick. I used to eat this little, and throw up this much.
That’s not always the case–sometimes numbers are important. I use them when I blog if the information is relevant to the issue (say, resumption of menstrual periods). It is okay to talk about these things in private conversations, too. But I think when the information is out there for the broader public, we need to be more careful and more thoughtful about the messages we are sending, and why we feel the need to share certain information, especially if we want diagnoses like EDNOS to be taken seriously.
I think we should adopt this kind of attitude:
There are questions she won’t answer. Alexis Katchuk won’t tell you, for instance, how much she weighed at the lowest point in her 12-year battle with anorexia. That number is dangerous: Katchuk doesn’t want others who are fighting the disease to see it and falsely believe they’re OK if they weigh more than she did. She won’t tell you how much she did or did not eat, either. She’s not interested in comparing calorie counts, she said, adding that those suffering from eating disorders tend to get into weight and diet competitions. (Source)
2. Often, we talk about what eating disorders are about, what they mean, and what qualities individuals with EDs have.
Most of the time, I think this is okay–we know that individuals with EDs tend to be more perfectionistic, for example. I think when it can get into dangerous territory is when we make blanket statements–statements that are not scientific and not supported by evidence–about what EDs are about and what patients with EDs are like.
We need to remember that our personal narratives are just that, personal. Writing “for me,” or “I think,” will do wonders for statements that are personal to your eating disorder.
Not everyone’s eating disorder is about control, not everyone experiences body image issues or is afraid of gaining weight (I often had no body image issues and no fear of weight gain), not everyone feels their eating disorder made them immature, not everyone’s eating disorder was “triggered” by models, magazines, trauma, or sexual assault. I’ve met people who felt their eating disorders weren’t real because their families were amazing and they didn’t experience trauma.
I think it is completely fine to talk about our personal stories, important even, because we are all different. But, we should not engage in a battle about what “real” eating disorders is, and symptoms and behaviours “real” ED patients have, particularly when these discussions are removed from eating disorder research. This doesn’t help sufferers, the public, or healthcare professionals.
SECOND, THERE ARE TWO MAIN THINGS I WISH TO SEE FROM ED AWARENESS ORGANIZATIONS.
And I’m NOT singling anyone out–some organizations are better than others, this is a general “wish list” of sorts.
1. Less focus on body image, dieting, and the media.
Yes, dieting is a risk-factor for EDs (and drinking alcohol is to alcoholism), but only a small portion of individuals who diet go on to develop eating disorders. Why? Not because they are vain, naive, or shallow. It is likely because they are genetically predisposed to find restricting (or bingeing/purging, though this often develops after attempts at restricting) calming or anxiety-reducing. Studies have shown that genetics explains 50-70% of the variability we see in eating disorder behaviour. Eating disorder are much more common in families and relatives of eating disorder sufferers, as are comorbidities such as anxiety and depression.
I realize you can’t have a prevention campaign centred around genetic predispositions, and dieting IS a risk factor we can potentially prevent. It is true, we can’t change our genetic make-up but we can reduce the prevalence of dieting and disordered eating attitudes.
Still–we need to be honest about what causes eating disorders, because overemphasis on body image, dieting, and the media sends a message to the public that those are the sole causes of eating disorders, and we know they aren’t. See here, here, here, here, here, and here. Oh actually, this, and this, and this too. To be honest, this entire blog is dedicated to unravelling the complex factors that cause eating disorders with an attempt to focus on things that aren’t commonly talked about.
2. More focus on eating disorder research that is not dumbed down to the point of being meaningless.
For example, this is taken from the National Eating Disorders Association (NEDA) website:
Scientists are still researching possible biochemical or biological causes of eating disorders. In some individuals with eating disorders, certain chemicals in the brain that control hunger, appetite, and digestion have been found to be unbalanced. The exact meaning and implications of these imbalances remain under investigation.
Wrong. Unbalanced? Did you know there’s no such thing as a chemical imbalance and it is actually not that hard to explain some of the research that we do know about? Yes, it takes a lot more effort, I know. I find it rather difficult to explain concepts like heritability. I don’t think I’ve ever talked about alternative splicing, and briefly mentioned epigenetics and alleles. Yeah, it is hard, but it is possible to explain these concepts without having to over-simplify to the point of being wrong.
And since starting this blog, I’ve learned that people are hungry (no pun intended) for information. They want to know what’s going on in their brains, their son’s or daughter’s brains, or the brains of their loved ones.
To be fair, the bullet point below the one I quoted is significantly better. I’m also glad to see them even mention biological factors, since I think it is completely, or almost entirely missing from the National Eating Disorders Information Centre (NEDIC) website (that’s kind-of our Canadian equivalent).
In any case, this is my wishlist for things I’d like to see in the future. I’m not blaming anyone or pointing fingers, believe me, I’ve made these mistakes too.
Let’s stop propagating the myths that surround eating disorders, together, because ultimately, that’s what we’d all like to see, right? I think it will improve healthcare services, decrease stigma, and help with prevention, too.
I’ll return to blogging about peer-reviewed research in my next post. (Warning, there might be a longer than usual break between posts because I have to prepare for my final committee meeting next week.)
What’s on your wishlist when it comes to what you want to see more of from individuals and organizations who do eating disorder advocate or awareness work?