May 2, 2015

Why fake news about eating disorders is hard to tell from real news


The headlines about eating disorders are usually shrill and often just plain wrong. So, when I got this one in my news feed I was dismayed but not shocked:

I wasn't shocked because MOST stories about eating disorders are similar. Someone describes a reason they became anorexic or bulimic or developed binge eating disorder. They describe their extreme symptoms and tell us why they did it.

There is an active debate in the eating disorders community about listening to patients. Patients want to be heard, and that is absolutely necessary and compassionate. We want to listen. That is a human right. Listening to people and hearing their views and opinions is always the right thing to do.

But with mental illness is listening the same as understanding?

When someone says they stopped eating because X: what do these "reasons" mean? Are they necessarily the reason because that person believes it is so?

Is it "silencing" to say things about ED causation that conflict with an individual's own perception? Is it invalidating to disagree with a certain view of causation because the sufferers themselves hold it?

I would say that it is when you're talking about and with an individual person, but not when it is an open public conversation, and that's sticky. Many patients put themselves into the public eye to help others, but then they become part of a larger conversation that is no longer one on one and no longer about them as a person.

At ICED there was an active, and un-pretty, discussion of what the voice of the patient with a BMI of 11 means. Some believe the "anorexic voice," for example, is an expression of real and lasting meaning for the person. Others think that voice is a symptom of a predisposed brain responding to negative energy balance (too little food for needs). Most people fall somewhere between those. It is an important difference of thinking.

As parents the LAST thing we want to do is invalidate or dismiss our loved ones. We love them. We are doing all we can to get them back the life they deserve that ED is trying to steal. We are working to get their real and lasting voice back.

So when we hear talk of "what these symptoms mean to the patient" and "meeting the patient where they are" it can be really frustrating and even infuriating. When we read articles about patients reporting that a negative comment, or Size 0 mannequins, or wanting to disappear made them mentally ill we are dismayed and we often DO want to step forward to say something about the genetic predisposition and what we know about the biology of these conditions. I would feel the same if that story about Steve Jobs' advice was really why someone thought they were mentally ill.

We want to reassure all parents that they didn't cause it, reassure all patients that THEY didn't choose it, and we want to point to good science as an antidote to myths. We want to help the readers of such articles and buyers of such treatments know that there are alternatives -- not to shut people down or invalidate them, but to prevent harm to others down the line.

The hard truth is that most treatment, prevention, advocacy, legal limits, insurance limits, and public perception rests on believing the ED voice is the true voice of the patient and what drives the illness. I believe that has led to a lot of harm and it needs to be questioned. I do not mean to insult or invalidate anyone, but not to question this issue is to let down the coming generations of sufferers and their families.

We no longer see the voice of schizophrenia, or dementia, or epilepsy, or tuberculosis, as telling us deep things about the sufferer. We understand their distress and anguish for what they are and we work to help them regain their unique and true and lasting beliefs and desires.

Off-handed advice from Steve Jobs doesn't cause mental illness. Neither, as far as I know, do most of the other reasons people report they developed an eating disorder. If we want to help new patients and their families we are going to have to say some things that contradict what patients say. Politely, and with respect for their experience, but not necessarily understanding it the way they do.

Ungrounded ideas about mental illness cause harm. Balancing that with respecting the individual patient experience is hard. It is tragic when those two interests clash, but that is yet another trap that ED sets for us all.

2 comments:

  1. Wow, I thought I knew a lot about the ED world, but I had no idea people (clinicians especially) really thought the ED voice was the sufferer's true voice.

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  2. Great, if scary post. I have relatives with schizophrenia and depression, and know how hard it is to work out what is talking. I work on the bass that anything that is saying that self destruction is a good thing is the illness talking. What people with mental illness need is great care from experienced professionals - just like any other illness. Having had cancer doesn't make someone an 'expert by experience' .............

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