I suffer from Awareness Week Ambivalence, and I’m not alone. Sure, I want attention to the cause: eating disorders are misunderstood, stigmatized, under-treated, and mistreated all over the world. I want awareness of the suffering, and I want to spread the word on newer more optimistic outcomes and recoveries possible now. I am not downplaying or criticizing those working hard to spread awareness in a world that largely forgets us the rest of the year.
I just feel like we’re asking for too little, and too nicely. And maybe: of the wrong people.
I’m hearing more and more among us sharing an impatience and frustration with “awareness.” As the media requests come in for February we don’t want to waste energy on repeating the same things every year only to be forgotten, and repeated, the next. We are weary of the same wrong messages, and even fresh new wrong messages, being spread every year.
Our image of awareness is generally to see how bad the illness is, and why patients deserve to feel well. Largely, it falls to those who suffer to show the world they deserve our attention.
Every year the public is shocked, “shocked!” that eating disorders are deadly, affect all kinds of bodies, and are treatable. Is it working?
We need to be shocked that this awareness is not leading to more and better treatment, nor is it decreasing poor treatment. We need more research, more resources, better training, earlier intervention, and professional evidence-supported treatment. We need less disability and dying. A lot less. Urgently.
These are treatable disorders. We’re not using the science we know, the methods we have, the compassion we know is necessary. Most people with eating disorders are not being recognized, given access to treatment, or enough treatment. Most people with eating disorders don’t have families and communities prepared to help them. Most of the information and support and even treatment they will encounter is based on under-resourced and often antiquated ideas. Are awareness efforts really pushing back against that?
People are not suffering and dying of eating disorders because we can’t help them: we just don’t. We haven’t made sure that front line clinicians and community members have authoritative information. We have not equipped families in their roles as supporters and caregivers.
It would not take that much to do this: we do it with other less common and less dangerous healthcare issues. It would take focus and will. Awareness is not enough.
We are not going to make progress if we are not aware of serious systemic issues in our own field. We need some awareness, ourselves, of our field’s role in looking the other way about poor and under-resourced treatment. We will need to all be aware of antiquated and uninformed treatment. We will need difficult conversations that are not as easy and pleasing as awareness campaigns to the public.
We must face our own community’s lack of agency, consensus, and action if we want policy-makers and the public to take us seriously.
Let’s make this the last Awareness week that makes those with eating disorders have to beg for recognition, support, treatment, and understanding. They deserve better, and the professionals and the advocates and the families need to raise our awareness of what goes on in the eating disorder treatment and advocacy spaces, not just the public’s. We are letting those with eating disorders down, and we have 51 weeks to make the next one demonstrably different!