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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.

Comments

  1. Gina says

    I don’t have the same sort of experience with online mental health communities that you do, so I’d be interested to start some discussion.

    In particular, you wrote:

    “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?”

    I think this is the solution, but perhaps implemented more explicitly. Recently, the Ministry of Training, Colleges, and Universities in my province implemented a university student helpline, which is similar to any sort of “Crisis Line” except this is a catch-all “talk to a professional” line for students who may be going through stress or crises, but don’t actually feel it’s important enough to call a crisis line (or associate too much stigma with a crisis line).

    Anyway, I wanted to bring out that example, because I think even help lines can have that feeling of being “open and honest” even though you know it’s trained professionals on the other line whose job it is to help you. I’ve used both this, and the crisis line, myself, and they’ve been immensely helpful.

    That being said, is it too idealistic to see if online mental health communities can gather volunteers (who might not immediately be going through a mental health crisis, but want to give back to a community that helped them, etc.)?

    Curious to hear more about your experience.

    • Kate Donovan says

      I agree that helplines can do this very well, but don’t think I’d describe them as a community; they’re more of a service. What about, for instance, the autism community, which is online (as well as in meatspace). The second (?) tumblr link I posted at the top sees this sort of dynamic playing out there.

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