rhivolution: Matthew Macfadyen is pensive, text: jeux sans frontieres (games without frontiers: Tom Quinn)
Rhi. ([personal profile] rhivolution) wrote2010-06-11 12:26 pm

Perhaps I am a miscreation: on OCD

So I'm sitting here, it's just a little after noon, and I am thinking about how to start this post on OCD. I started writing it in my brain last night, and like most things in my brain, it sounded much better up there, and then the good bits fell out through the sieve that is my short-term memory.1 While I wanted to write about the media and representation, I realized that my opinion makes little sense without explanation of where I'm coming from. Therefore, much of this is ME ME ME, with less analysis. I'd apologize, but that'd be imposter-tastic.

1 Which is a post in and of itself, let me tell you. am only now discovering that the exacerbation of this may actually be a medication side effect as well as ADD-related.

This post, as I noted in my con report, was inspired by the Mad Seers panel at WisCon. Please also be warned that the discussion may trigger people with mental health issues. The Dar Williams theme does not continue throughout, fear not.

Are you positioned comfortably? Then let's begin.

------
I have now been crazy for more of my life than not. Since I'm 26, you can do the math, and also find out that I've never been a sane adult, never been an unmedicated adult.

To be honest, if I think about this too hard, it freaks me out, because I come from a tradition of avoiding medical help, even over the counter medication, unless there's no other way to will yourself through the whole thing. I am not sure if this is typically American (insert rant about universal healthcare here) or just a product of my stoic German dairy farmer heritage or what, but the fact that I am so medicated at 'such a young age' bothers my mother to no end. The fact that I may very well be taking SSRIs for the rest of my life is something we avoid talking about.

While I don't believe that medication can solve everything, it has worked well enough for me. The side effects are bad but the alternative, which I have indeed experienced (when shifting to generics that didn't work, is far worse, leaving me barely functional and depressed as fuck. Yes, I'm tired all the time, and as I noted, I have a shit memory, but I can muddle through most days and be vaguely productive. I'm also far happier with myself, though I am still a bit depressed, because I don't feel like I'm productive enough a lot of the time, and fall through on things, and that people hate me for that, and just...

Anyway, that's a post in and of itself.

It's only recently that I have come to accept that this is a disability, that I am a person with a disability. I'm still not entirely sure what to do with that yet, other than as an identity and for solidarity's sake. I am very slowly coming around to realizing that needing a nap or being tired every afternoon is not 'being lazy' or because I don't get enough sleep at night. It's now nearly 12:45 pm, I got over eight hours of sleep last night, and I'm starting to lag a little...in fact, I may have to set this aside until after a nap, come to think of it...

I have to accept that this is okay, that just because it is not part of the normative paradigm of daily life in this society does not mean I am lazy or screwing up my sleep patterns (unless anxious, I can sleep at the drop of a hat, and unless I drink more than 2 cups, or drink it on an empty stomach, caffeine does little). It is okay to have to take secondary pills when I have to power through my day...which I do. I cannot do all of the things I want to do in a day, no one can.

I am not wrong. I am not bad.

I do not yet believe this.

-------
So I've set this aside for two days, partially because yesterday I bunked off to see Robin Hood on [livejournal.com profile] unholynotions's dime. And the Robin Hobb (shift the letters!) shit went down too, and I just did not have the energy to deal with it. I'll deal with the latter later, and the former's not really part of this post.

I've decided that I need to talk about how OCD feels, and about the experience of it, because this really isn't well represented in any context. This is possibly because unless you have it, it's next to inexplicable. If you were wondering, this is why I cite Orson Scott Card's Xenocide at the drop of a hat, because despite his massive fail about nearly everything, and the problematic nature of the OCD plot point in that novel, he gets the psychological and emotional experience of an obsessive-compulsive episode or ritual down to a T. At least in terms of my experience, ymmv.

That isn't easy to do, and I'm going to try to do it now. I could refer you to pages whatever through whatever of Xenocide (if I get up from the computer to find it now, I may not continue powering through this essay), but context is important on some level to that description.

You know about the rituals. Handwashing, stepping on cracks. These are easy to describe, and probably why OCD is played the way it is in the media (more on that later).

But OCD is different than a lot of mental illnesses. There are a lot of similarities, but there is one very crucial element: much of the time, we are vibrantly and actively aware that rituals are unnecessary, that there is no fucking point to them, and that the anxiety we feel over not completing them has no basis to actual events. I can't describe how this is different to other forms of mental illness and awareness of your irrationality, but...I am depressed and I have ADD. I can and do logically understand that I'm not supposed to feel or behave like this, even been frustrated by it, but it is how I feel, and I perceive that feeling as real. (And it is real, my perceptions are real.)

This is not the same. This is being perfectly and utterly clear that we do not need to do this, we do not want to do this, we do not feel the need to do this, that nothing bad will happen if we don't--but we are trapped by anxiety into performing a ritual, against your better judgment. Please, please note that I don't say this to belittle the experiences of people with other mental illnesses, merely to try to illustrate that there is, very often, a difference. And maybe I'm not explaining it very well, but there is no real way to do so other than that we know and feel in our guts that the anxiety is not real, but we cannot make it go away.

The reason I'm trying so hard with explaining this is because this divided mindscape is just as bad as the ritualistic behaviors that take up your life.

Why? Because we are forever trapped, utterly aware that we are doing these actions for no reason but to assuage an irrational fear that we know isn't real but is there anyway. We know that checking the light switches until they feel right doesn't do anything to prevent an electrical fire in your house, and we don't want to check them, but we can't make the anxiety go away until we do. We know that tapping our door closed nine times won't ever keep our mother from getting sick, but we can't push the anxiety away until it's done.

Hopefully you can see where this is going: self-hatred. So many people with OCD have depression too, because that kind of self-loathing doesn't exactly lend itself to a positive mindset, for a start, and your serotonin levels are already fucked.

And that's why I'm so pissed off about OCD in the media.

------
Maybe we don't have a sense of humor, but generally, everyone I know who has it agrees: OCD is not fucking funny. And yet, we get played so damn consistently for either laughs or pathos.

Tapping things and not being able to shake people's hands in certain scenarios and having problems with dogs but still having to walk them...

That reads as 'funny', because haha, nothing's gonna happen to them if they shake the guy's hand who just sneezed, so it's fine, oh, and people with issues are hilarious. (Remind me to fucking eviscerate the dumbass who came up with the Monk tagline 'the defective detective'.)

Or 'pathetic' because oh, look at how upset and trembly they are over doing something like not closing a door, look how they're falling apart. WE CAN REBUILD THEM THROUGH LOVE AND FORCED DESENSITIZATION AND EVENTUALLY THEY WILL REALIZE THE ERROR OF THEIR WAYS. (A big fuck you to the fifty-two million OCD House reality shows.)

Fuck. That.

We know all that shit already, thanks. That's why this is not funny, and why your forcing a change on us just makes the frustration worse. The self-knowledge is the part you don't see on TV, or if you do, it's just the pathos. Our behavior is irrational, but our pain, our pain at knowing that fact, is not, and that is what the media ignores. We are self-aware and we are hurting, and that is not easy to show on a screen or even to tell you here without fucking up. And the media is so often exploiting the surface without digging deeper. Doesn't make for good telly.

And saying 'Oh, I'm so OCD', besides being grammatically incorrect, is also really frustrating. One area of attention to detail does not a disorder make. Also, shockingly, not all of us are clean or organized...sometimes we don't have TIME for that because we're too busy with ritual. And when we are, we often don't see our neatness or attention to detail as a benefit but a bloody curse. Shut. Up.

So all I can ask is please try to remember my words, the next time you encounter OCD. There's a very real and very upset person underneath each ritual, and they are not laughing. And their tears aren't for your consumption, either.

-----
On medication...

If you did the math in my first section, you probably figured out that I was medicated at a youngish age. In fact, I was put on SSRIs as a young teen, but this was back before people realized that that might not be the best plan as they can seriously plunge teenagers' moods into suicidal depression. I consider myself fortunate, and slightly spooked looking back at it, to not have had that happen to me.

But without the pills, I don't know where I'd be at. I had a breakdown on switching to generics at not-quite-18, and if that's any indicator, I'd probably barely be able to get out of bed, unable to face a day full of ritual and little enjoyment. Therapy...was all right, but didn't really help much. I trust my shrink better than anyone I've ever had for therapy, and I'm fortunate that he gets it and cares more than just as a meds dispenser...many are not this lucky, I know.

It's not, by any means, a wonder drug, for reasons besides the side effects. When I initially started taking it, I wondered what the fuck was going on, why I wasn't just stopping...but the truth is that OCD, like many other mental illnesses, becomes so very engrained within the psyche. The only person who can break the cycle is oneself. Others can assist--through CBT, medication, whatever--but it's really just up to our own inner strength to try and break it, or break some of it, or whatever.

I did, some of it. I mean, I get by, these days. I can fit into societal norms, a job or a degree. But the thoughts are still there, bits and pieces throughout my day, never entirely escapable.

This is why I object to the whole 'no meds, you're a better person without them' movement. To say that makes me more creative is a massive pile of bullshit. I can't be creative if I can't bloody make myself knit or type or whatever without going back over each stitch or character on the screen because I got caught up in some anxiety. I can't be a better person if I can't bring myself to DO ANYTHING. I really have no fucking idea how that's supposed to work.

Which is not to say that I'm all in favor of medication for everyone in the world ever (and there could be a whole other post about how this is even worse in Britain than the US...). I think it needs to be judged carefully for everyone, that a patient must play a role in this decision, and that the ideal is to get to a place where the person affected is truly okay with her/himself.

Easier said than done, and we don't have the infrastructure or the treatment for it, but hey, I can dream.

As for Ms Lindholm/Hobb: Just because you have an issue about drugs does not mean that you should inflict that on your kids. As I said before, my mother thinks I take too many pills, but at the same time, she knows that the SSRI is vital, even if it scares her that I may be taking it for the rest of my life. Medication as a teenager probably saved my life. Blanket statements about how people can get on without it don't help, because your experience is not everyone else's.

------
Questions? Comments? Did I fuck up? god, I hope I didn't fuck up too badly. As I noted, I really don't want to say that anyone's experience is invalid, and the area of explaining OCD's difference is...hard to put in words.

This is just my experience and the experience of other people I've known. Hopefully you got something out of it. If you did, please let me know...it took a lot out of me to write all this and post it publicly. I want the information to be out there, and I want people to know you're not alone.

I just want to know I'm not alone either.
were_duck: Ellen Ripley from Alien looking pensively to the right in her space helmet (Janelle Monae in the grass)

[personal profile] were_duck 2010-06-11 05:48 pm (UTC)(link)
Thank you for making this post. It's powerful and I'll definitely be thinking about it whenever OCD comes up. Especially when people say "I'm so OCD", because that shit is not on.

Do you mind if I link to this post?

There's a very real and very upset person underneath each ritual, and they are not laughing. And their tears aren't for your consumption, either. a fucking world of "word" to this statement.
were_duck: Ellen Ripley from Alien looking pensively to the right in her space helmet (Hair)

[personal profile] were_duck 2010-06-11 06:12 pm (UTC)(link)
I am kind of out of the reality-show loop, so I hadn't heard about this new awful flavor before this post, but ugh. How does one 'win' the OCD reality show? By doing more 'wacky' rituals than anybody else? By pandering to a studio audience? That is just horrible, playing off peoples' lived experiences for spectacle and let's not forget, profit.

Have you read Eli Clare's Exile & Pride? There's a chapter near the end of the book on people with disabilities and, especially, people with non-normative bodies taking advantage of that spectacle for personal profit, and CLare working through the personal and political implications of hijacking the dominant gaze. It's a lot of food for thought, and I'm not sure Clare works quite through it in the book, but it is what immediately came to mind when I read your comment.
littlebutfierce: (diane  duane guard growth)

[personal profile] littlebutfierce 2010-06-11 06:12 pm (UTC)(link)
To say that makes me more creative is a massive pile of bullshit. I can't be creative if I can't bloody make myself knit or type or whatever without going back over each stitch or character on the screen because I got caught up in some anxiety. I can't be a better person if I can't bring myself to DO ANYTHING. I really have no fucking idea how that's supposed to work.

SRSLY.

Thanks for writing this post. I think a lot of people will be comforted, knowing that they're not alone, & vice versa.
maevele: (Default)

[personal profile] maevele 2010-06-11 08:10 pm (UTC)(link)
" I can't be a better person if I can't bring myself to DO ANYTHING. I really have no fucking idea how that's supposed to work."

this. oh god this.
starlady: A typewriter.  (tool of the trade)

[personal profile] starlady 2010-06-11 08:29 pm (UTC)(link)
I definitely got something out of it; thank you for posting.
gumbie_cat: person with just part of their body visable and one needle with several inches of garter stitch (knitting is cool)

[personal profile] gumbie_cat 2010-06-11 08:43 pm (UTC)(link)
It's only recently that I have come to accept that this is a disability, that I am a person with a disability. I'm still not entirely sure what to do with that yet, other than as an identity and for solidarity's sake.

This is pretty much where I'm at right now with my depression, learning to live with it and accept that it's not going to disappear as quickly as it started. I think I'm getting better at that. At being kind to myself, or at least not beating myself up as badly.

Thank you for writing this.
jesse_the_k: mirror reflection of 1/3 of my head, creating a central third eye, a heart shaped face, and a super-pucker mouth (Flashy Bipolar means 2x fun)

[personal profile] jesse_the_k 2010-06-12 02:48 am (UTC)(link)
As far as I can tell, it's always hard, because we're living in a society that's soaked in normate bigotry. So even after this very thoughtful, educational, and brave post; after your introspection; after the hard work of identifying what you need to do to cope (like accepting a nap)*, we're still in a world that takes pains to remind us every day in every way that our lives just ain't right. That access is a zero-sum game, there's not enough to go around, and who the hell are we to demand room?

FFS, I've been using a big powerchair for 17 years, and I still struggle with the "am I disabled enough"?

*Not taking naps is a powerful signifier of "adult" in North America. When we're babies we love 'em, as we get walking we resist 'em, and when we hit 50 or so we embrace them again.
raanve: (Rushmore - Max reading Cousteau)

[personal profile] raanve 2010-06-11 09:51 pm (UTC)(link)
Thank you so much for this. This is brave.

It does help me better understand an experience of OCD; that's not part of my personal understanding, but I think it should be. (I've worked to try to understand other disorders, in part because it helps me better reach out to people who need reaching out.)

You also address something that came up for me in the 'mental illness panel' at WisCon, which is a question of why certain disorders get depicted more frequently, and others not at all, and how filmic media in particular can address these. I'm not sure I quite know where I'm at on this one, but this post helps to throw a few more things into focus for me.

So thank you. :)
bluemeridian: (DW :: Donna)

[personal profile] bluemeridian 2010-06-12 02:31 am (UTC)(link)
Thank you for posting this. I hesitate to identify myself as having OCD because my repetitive and ritualistic behaviors are relatively mild and usually only appear when I'm under stress, although I still guard against them. There is still much I can relate to here as coping with depression and a lack of attention span will be a lifelong challenge for me.

and then the good bits fell out through the sieve that is my short-term memory.

It's remarkably difficult to not be 'normal', or something approaching it. I absolutely hate it every time I have to tell someone that I don't have a day job nor do I have kids because they inevitably ask some variation on 'so what do you do?' Every job, every schedule, and every set of workplace politics quickly become so physically and mentally stressful that... well, it makes me tear up just thinking about working right now. But how do you put that in a more socially acceptable context? I look able bodied enough, after all, and that makes it all the harder to accept it myself.

Tied into that is the painfully honest admission of "I forgot" when I've missed yet another appointment. In a work situation it's an untenable position, at least outside of work it's merely embarrassing. Notes only help when you haven't completely lost track of time, after all!

Sorry, as this is a bit tl;dr, but thank you again for writing this out. Makes me feel a little less crazy. :)
revena: Drawing of me (Default)

[personal profile] revena 2010-06-12 07:01 am (UTC)(link)
Very powerful post. Thank you for writing it.

There's a little bit of overlap in what you describe of your experience of OCD behaviors and what I experience sometimes when hypomanic. I often realize after a point that I'm engaging in an obsessive behavior, and find that I'm unable to stop wanting to do it. I can stop myself from knitting/doing dishes/watching the same television show over and over/whatever, but whatever else I do, I spend the whole time thinking about it and wanting to do it until the urge passes, up to a day or two later (and I have to drug myself to sleep, when it's that bad, because my brain won't shut up at all). But the onset for me is really subtle. I often don't realize I'm doing it until my wrists start hurting, for example, or my husband mentions that I seem kind of manic.
mercredigirl: Text icon: Mostly, we don't remember the days. We remember the moments. (We remember the moments.)

[personal profile] mercredigirl 2010-07-05 08:52 am (UTC)(link)
And saying 'Oh, I'm so OCD', besides being grammatically incorrect, is also really frustrating. One area of attention to detail does not a disorder make. Also, shockingly, not all of us are clean or organized...sometimes we don't have TIME for that because we're too busy with ritual. And when we are, we often don't see our neatness or attention to detail as a benefit but a bloody curse. Shut. Up.

I want to disagree with this, because while I've never been diagnosed I identify as having OCD because crying over a crumpled page and rewriting an entire homework assignment over one slanted line and washing hands furiously - well, I hesitate to call that normal-paradigm behaviour :x But at the same time I feel guilty for co-opting a term that you have far more right to use, and I understand that what you mean in particular is people who are just being neat making a joke out of a genuine condition.

So yeah I feel conflicted and ambivalent at the statement but I recognise your post as being very powerful and wonderful and clear and strong and I want to thank you for it anyway.

I'm sorry for the rambling, I'm running on low fuel and giddy with nausea, but I hope that makes sense.

[personal profile] chagrined 2010-07-11 07:28 pm (UTC)(link)
Linked to this through going through some old entries on someone else's journal. Anyway, just wanted to say that idk wtf is up with this recent explosion of OCD reality shows either. I was browsing through some TV community the other day and saw SEVERAL OF THEM and was like, "ARGH" and "WTF." Pondered downloading them just to see how awful they are, but thankfully managed to stop myself as I'm relatively confident they're probably pretty awful. FFFFFFFFFUUUUUUUU REALITY TV.