On ‘Bad Media’ and Bingeing

[Content note: eating disorders]

I still think about this article on writing about eating disorders:

Ginia Bellafante put it well a few years ago, in a book review for the New York Times:“Anorexia is a disease of contradiction: it demands both discipline and indulgence …. The anorexic disappears in order to be seen; she labors to self-improve as she self-annihilates.” Bellafante describes the condition as “an intellectualized hallucination.” That concise definition is better than any I’ve read, and it points to the conflicted way in which we talk about the disease: our intention is critical, but our language is celebratory.

I don’t have a good answer to the main premise–that we are too easily awed and worshipful of deprivation, even when we try to talk about the horrors. I’m wary of overusing the word ‘fetishize’, but it does seem to fit, drawing closer and closer as we write about the horror. Moths and flames, you know.

And I don’t want to object to writing more articles about eating disorders–but there’s a definitive trend in what aspects of eating disorders we talk about. Mainly, we talk about the ones we can link to Big Societal Problems–supermodels and photoshop are making us all want to be unrealistically thin! Young girls are feeling pressure earlier and earlier to diet! And this seems to result in prioritizing a certain kind of story.

Nearly every article about eating disorders ever will describe in painful, clear detail how someone (usually a girl) deprives themselves. 
How they think about it, the tricks they use, how good it feels. 
And nobody ever manages to write about bingeing, though most people who deprive binge as well, and most people with an ED end up wandering through diagnoses. Several targeted google searches for eating disorder articles, and I couldn’t find a intimate interview. No first-person stories that centered around bingeing–the purging afterwards, sure, the bouncing-back into depriving, sure, but not the gripping, hollow, band-around-your-chest feeling of bingeing. 

It’s nice that you want to write those articles about eating disorders, and I’m all in favor. But please, let’s not talk about how bad it is that Other, Bad Media glorifies disordered behavior when all you’ll write about is the stuff that makes you skinnier.

Help-Seeking and Status

Image credit: Rhoda Baer, National Cancer Institute

Image credit: Rhoda Baer, National Cancer Institute

[Related to How to Be a Good Depressive Citizen, this tumblr post and also this one]

I want to talk about something that plays out in the communities I love.

But first, I want to talk about schizophrenia.*

—-

There’s this feature of the onset schizophrenia that makes it extraordinarily hard to treat. We call the before-full-blown-schizophrenia stage ‘prodromal‘, and if you can catch it right in that stage, or close to it, your outcomes are much better.

Except.

Except that the big obvious signs of schizophrenia in that stage are negative symptoms: speaking in monosyllables, emotional flatness, anhedonia, disinterest in activities and relationships and friendships. And in most cases, this part plays out in relative silence.

Your friend stops reaching out to spend time with you, flakes out on group plans, seems bored in conversation. After a while, you stop being the one to call. They’ve found other friends, they just aren’t that into you, you’ve got other friends who put more work into the relationship. It’s quiet and it’s insidious, and I’d bet you don’t quite notice it until you run into each other at the store and wow, it’s been months since you hung out! 

For the most part, this is normal and natural–friendships do the slow fade* and fizzle and evolve. The vast majority of these things are not the result of an incoming bout of psychosis. So you can’t do much to address this. You could possibly make it the social norm to follow up on waning friendships until someone explicitly tells you they hate your company, but I imagine this as being hard to enforce and resulting in more excuses for ignoring other people’s boundaries. (If your solution is to only do this for friends you know are at risk for developing schizophrenia, then you may have even more forthright friends than I.)

So, what happens in most of the prodromal cases is that the person quietly retreats–maybe not even quite noticing that they are–and then when the positive symptoms of schizophrenia set in (hallucinations or delusions or magical thinking, etc), there isn’t a support system there for them. There aren’t friends there daily who can confirm that they’re going to work or taking medication. There isn’t friendship for friendship’s sake; relational interactions are important. And the extent to which this occurs is fairly predictive of outcome of the disorder. High social support means fewer episodes and hospitalizations, better medication adherence. Lower social support…doesn’t.

—-

And back to communities I love.

Communities have hierarchies. There’s variance in how much they’re enforced; there are levels of enforcement and policing and explicit/implicit acknowledgement of the rankings.

Except.

Except that this gets incredibly complicated in communities that are specifically about help-seeking, about coming together and supporting each other; the communities that are explicitly about Not Being Like The Rest of Society. Take, for instance, the mental health community. (Though you could almost as easily use the geek community, or other nerd/geek subtypes.)

The thing is, communities, even those created to be Not Like The Rest of Society, have values on multiple axes. Charisma, though perhaps a slightly altered definition, plays a role. Ditto for the halo effect, though attractiveness might be assessed slightly differently. And so through accidental privileges and intentional power-grabs, some people in the community end up more liked and more likeable.

I am not positive, but I would guess that it is somewhat harder to be in a community where you’re not supposed to be stigmatized, where your particular Problem isn’t unusual, and to have  all of that and watch them say “oh no, that sounds bad” and help everyone else more. And that this problem is magnified when the community you’re in is one you joined because The Rest of Society already did a bad job of caring.

And of course, people wish to prioritize helping their friends, and I think we mostly accept and encourage this. But it remains that some strangers will say “X happened”, and there will be an outpouring of support and love and empathy and praise. And you can have the same thing…maybe you have it worse, maybe you can’t afford to be so public about it, or don’t have the social support to let you present a showered and articulate and slightly-self-deprecating face. Maybe you don’t have the right language; you hate being crazy, you don’t know how to preface your anorexia-thoughts with how you know that healthy can be at any size, but sometimes your brain lies…because you aren’t at the place where you know it does.

And this is a problem. These are the people you want, in the abstract, to help the most–the ones who are new to the community, who aren’t already popular, who aren’t able to be effortlessly cared-about. They’re also the ones that can sound like they pattern-match for the people you’re in this community to avoid. They can be the ones who trigger you or make you slightly uncomfortable. And you joined this community to be safe and relaxed away from The Rest of Society, right?

—-

You can try to fix this, in these communities. You can assign people to make up the difference; to do the checking in and supporting. You can try to deliberately close the gap. Except that these communities also tend to put lots of value on being open and honest…and this sort of thing can quickly feel fake and dishonest. Not to mention, it’s work! You’re not being asked to comfortably inhabit your one safe space, you’re being asked to do emotional work to keep it. And The Rest of Society doesn’t do this, and weren’t you trying to carve out your own place that wasn’t emotionally exhausting?

But, in the mental health community, you’re in a community that’s explicitly about supporting people without ready access to society at large. So it might be even more important that you work hard to help more than just those who can passionately and lucidly explain their pain.

But…it’s easy to fall into patterns of identifying with charismatic leaders and using specific ingroup vocabulary, and helping the people who can tell you exactly and clearly what they need (with the implied understanding that if you’re busy or unable to help, they’ll get support some other way). Because there’s a difference between someone looking up at you and saying I need everything and I’m mostly okay, but could you do this one thing?  and diffusion of responsibility is a hell of a drug.

I…don’t have a solution to this. I’m not sure I even have part of one. But I do know that in my community, in the wide, tumblr and blog and activisty mental health community, there are those who get help, and those who get helped more.


Two notes: One, I’m not talking about privilege here in the classic social justice sense, because I see this replicate across homogenous groups who align on the commonly cited axes of privileges. For instance, I’d expect the phenomenon in a small group of equal-income, same-aged, same race friends. Two, by note One, I’m not saying we should ignore the role privilege plays, just that I had a word limit. 

*This…happens in real life more than I care to admit. 

**For the record, The African Violet of Friendship is sometimes a much better idea than the slow fade.

Non-Auditory Voices and Other Quirks of the Brain

March, in Chicago. I’m on my way to the Art Institute, and already late. Music in, coat up around my ears–it’s March in Chicago, after all. I rush by a panhandler sitting on cardboard under a doorway.

Wait.

Stop.

Turn.

I’d attended a class with a friend and had been trying to teach myself sign language for a few weeks. I was pretty sure I’d just recognized some signs from the woman in the doorway. Like me, everyone was hurrying by, avoiding eye contact. But she was signing…pausing…signing again. It was a pattern that looked a little familiar–a memory from working in schizophrenia research. The woman seemed to be talking–quite animatedly–to someone invisible.

Was she signing to voices? How would that even work? Would seeing someone signing to you be an auditory hallucination or a visual one? Would signing-hallucinations be entirely separate from other visual hallucinations (such as hallucinating animals or people following you)?

Which brings me to this research, months later: Exploring how deaf people ‘hear’ voice-hallucinations.

Participants born profoundly deaf reported non-auditory, clear and easy to understand voices. They were all confident that they did not hear any sounds, but knew the gender and identity of the voice. They reported seeing an image of the voice signing or lips moving in their mind.
[...]
Individuals with severe language deprivation and incomplete acquisition of either speech or sign, were remarkable in that they did not experience either auditory characteristics or perception of subvisual imagery of voice articulation, suggesting that language acquisition within a critical period may be necessary for voice-hallucinations that are organised in terms of how spoken or signed utterances are articulated.

Among other fascinating discoveries, people with acquired deafness could have auditory hallucinations, even if they did not currently have the ability to hear. Those born profoundly deaf and who had grasp of a communication method also could hallucinate voices, but in non-auditory ways. Those hallucinations would be organized, with genders and actual identities that could be distinguished from one another.

Incredible on its own, but even better, it gives us more information about schizophrenia. If both hearing and d/Deaf people with schizophrenia can experience similar hallucinations of people communicating information, where variance is found simply in the presentation of the information, it suggests an underlying structure of the disease that is independent of the communication system of the afflicted. It matters less how you do it–schizophrenia doesn’t appear to distinguish. Something is changing within language processing. 

Science is cool, y’all.

Update: I forgot to include a link to Charles Bonnet Syndrome, the condition of having visual hallucinations when visually impaired.

[#FtBCon] Skepticism & The DSM Notes

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DSM-IV and Me: It’s complicated.

Tonight at 6:00pm Central (that is, right now), I’m giving a talk about skepticism and the DSM: the Diagnostic and Statistical Manual of Mental Disorders.

This is the link to watch. 

Summary:
Multiple personalities? Personality disorders? The Diagnostic and Statistical Manual (DSM) contains a list of all recognized mental illnesses. How valid is it? Kate will look at the best and worst mental health diagnoses and talk about what makes for useful skepticism when it comes to mental health.

My goals:

-How the DSM gets the diagnoses

-Should we throw it out?

-What diagnoses are particularly good? Which ones are particularly bad? Why?

-Overdiagnoses. Let’s talk about it. 

-What does the future of diagnosing mental illness look like? (In which Kate makes wild speculation and expects to be wrong.)

-Taking lots of questions. 

—- A Long List of Resources and Elaboration on Things I Mention —-

Reliabilty vs. Validity. I touched on the difference, but there’s also different kinds of each! Learn more here.

Changes to the DSM? Take a look at the whole list via the DSM5 website.

I talked about the 1973 change that removed homosexuality from its classification as a mental disorder. For more information here’s a transcript of an interview with some of the psychiatrists in the American Psychiatric Association (APA) who made it happen. Includes Nixon masks and a secret group called the GayPA.
Part 1
Part 2

Schizophrenia: more info on symptoms and causes here.

Eating disorders–a comprehensive collection of research.
DSM5 updates [pdf]

Depression
-Prevalence
-Biomarkers research

Personality disorders: the DSM5 alternate hybrid model [pdf]
Obligatory Marsha Linehan fangirling

[Will update with more post-talk!] 

IMPORTANT: I won’t be able to check comments here! Ask your questions in the chatroom, etc.