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Centering Anorexia

A few weeks ago, F.E.A.S.T. devoted a Tough Topics Thursday live event to the question of why “eating disorders” are so often assumed to be anorexia nervosa and not the full spectrum of eating disorders.

I wanted to do this topic, one of several “tough” topics we’ve explored, because I hear so often about this issue from the parent community. Our family dealt with anorexia, so of course I am familiar with and often speak of how dangerous and insidious it is. But over time it became clear to me that families facing all eating disorders suffer just as horribly but those that don’t fit the “anorexia” label are even less understood and supported. Or even included.

I was pained to learn that a few people thought that we were asking for less attention to anorexia, which couldn’t be further from the truth. I was sad to learn that some people heard about our topic and were offended because they deeply felt that anorexia does need more attention compared to other eating disorders. That surprised me. We published those comments in advance alongside all the others. The conversation itself was lively, diverse, and controversial.

It turned out we had some differences in the community over two issues: whether anorexia nervosa is more common, and whether it is more deadly.

First, let me say that it is heartbreaking to be arguing about which is the ‘most anything’ when it comes to eating disorders. Surely we can and should ally together regardless of whether one is ‘more this’ or ‘less that’. Eating disorders are all devastating, dangerous, difficult diagnoses. We have too little information as it is, and need to use what exists while fighting like hell for more: we have much to learn. Eating disorders are not well studied, not well understood, not even well defined.

F.E.A.S.T. held a Congressional Briefing in 2012, in Washington DC, where the NIMH representative testified that the 10% mortality rate for anorexia was also true for the full spectrum of eating disorders. That figure has been confirmed for me by other sources but there’s debate around it. If I’m wrong, I’d like to change my stump speech on it, and I am always looking for more data. Wouldn’t some good news on mortality be wonderful!

I’m also given to understand that anorexia nervosa is the least common on the spectrum of eating disorders: approximately 1% of the population will experience it. That’s a lot of people. Our family member was one of them. But eating disorders are an enormous problem: between 2-3% of us will have bulimia nervosa, and binge eating disorder (BED) is experienced by 2-3%. Again, I would be very happy to be corrected, but I try to stick with evidence from the most authoritative sources. I’m even a member of a coalition of eating disorder organizations who are working on an agreement on what statistics are supported by evidence, and how to share them with the public.

Being equally deadly, and less common, doesn’t make me think of anorexia as less important, for me, it makes the full range of eating disorders important to recognize alongside anorexia.

In no way would I, as a mother who has experienced caregiving for someone with anorexia, downplay that disorder. But I honestly feel a responsibility to pull UP the concerns of all families facing eating disorders. In my work here at F.E.A.S.T. I  see the devastation of families who are doing heroic caregiving, and too often losing their children, but also suffering stigma even among eating disorder advocacy, research, and treatment options.

I see families whose loved ones are denied care for not being underweight enough. I see families too ashamed to speak up or get help about symptoms like purging or binging. I see families who feel unseen and unheard by movies and media that do not include them. Under those circumstances, I am sorry to cause hurt to those who rightly fight for more attention to one disorder but it would be remiss to ignore that we could risk downplaying the needs of most families. I think we all benefit from fighting together. Raising up others does not bring anyone down, it makes us a larger and stronger community.

It’s an issue of fairness, of course, but also significant for those with an anorexia diagnosis. The false sympathy of the public over extreme emaciation is often withdrawn when a person gains back their normal metabolism. The very idea that anorexia nervosa is dangerous because it leads to emaciation is dangerous: this leads to less access to care for those who are medically stable but not well by literally downgrading their severity of mental illness based on weight; Anorexia nervosa causes immense suffering at all weights. I believe it hurts families facing anorexia to be lured into the idea that it is special, too, because the mythology around EDs also tells patients that their illness is valued, lauded, and admired compared to other eating disorders. We were flooded with messages before our broadcast by patients and their families, as well as clinicians, relieved to hear that their disorders merited attention, too.

Even health systems around the world have bias: in some countries, anorexia nervosa is the only eating disorder to be treated, and only at the lowest weights.

This goes for centering anorexia nervosa in research as well. The pool of funding and researchers interested in eating disorders is small: expanding our view of eating disorders does not draw away from anorexia nervosa, I would argue, it would increase capacity and interest. Since eating disorder patients often move along the spectrum over time, putting anorexia in a world of its own in terms of research could mean limiting it only to patients who have only had anorexia — leaving out those who have had other diagnoses. Or, so-called “atypical” anorexia. Seeing the full spectrum of eating disorders as a specialty for treatment and for research expands resources and expertise. A genuine understanding of all eating disorders stands to help us understand anorexia better.

I have long wondered if even the definition of anorexia is based on a bias that has kept us from understanding it at all. To know that, I hope to broaden the lens.

Treatment providers do not treat one eating disorder: they treat all of them, and usually other diagnoses as well. They need evidence to guide treatment planning, and using anorexia-based information isn’t going to help everyone equally. So more research across the spectrum is important.

It is tragic when anyone feels their family’s experience is invalidated or less important. This speaks to the desperation and isolation of families: anything for anyone else seems to take away from their own. I would argue, as I did during our online event, for the idea of abundance thinking instead: by making visible and heard the families who have been marginalized we become stronger as a community. No one needs to lose by us raising up those who have felt silenced. In fact, we all stand to gain. It falls to all of us to do that work.  To believe otherwise is a testament to the deep pain and harm we have caused as a society to families facing these difficult diagnoses and tragic outcomes.

I’ve spent a lot of time fighting for a spectrum view of EDs and for all families to be included. I find it irritating and exasperating that the media and the public and even conference organizers and authors  — not to mention researchers — often feel less comfortable talking about eating disorders other than anorexia. I shared a slideshow of where that bias seems to come from, and proposed some ways to change it.

NO family deserves to feel alone or unwelcome. No diagnosis needs to “win.” F.E.A.S.T’s goal is always to include and heal. And listen. These are “tough” topics, but if we can’t explore them in the parent and family community, who will?

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