Thursday, August 12, 2010

Letters to People Who Are "So OCD"

Dear People Who Are "So OCD,"

I just wanted to inform you that you (probably) aren't. As someone who deals with an anxiety disorder, dermatophagia, and dermatillomania (little-studied disorders that are often considered OCD-spectrum) on a daily basis, it really pisses me off when you say this. Oh, wow, you like your house to be clean? That doesn't make you OCD. You like to keep your colored pencils in a certain order? That doesn't make you OCD either.

According to Wikipedia (which I know is a sucky source): "The phrase "obsessive–compulsive" has become part of the English lexicon, and is often used in an informal or caricatured manner to describe someone who is meticulous, perfectionistic, absorbed in a cause, or otherwise fixated on something or someone.[3] Although these signs may be present in OCD, a person who exhibits them does not necessarily have OCD, and may instead have obsessive–compulsive personality disorder (OCPD), an autism spectrum disorder, or no clinical condition."

Megan Fox does not have OCD because she thinks public bathrooms and restaurant silverware are germy. Hearing her say she has OCD because of this was what ticked me off enough to start thinking about making this post. It pisses me off to no end when Very Public People decide to say something that in any way diminishes the seriousness of any kind of health-related condition. It's irresponsible to continue misconceptions about what Obsessive-Compulsive Disorder actually is, because it can in fact be very serious and heart-breaking and isn't some sort of novel phrase you throw into conversation to make yourself sound quirky-cool.

Here's what OCD is for me:

OCD is when you have intrusive thoughts about gruesome, horrifying situations in your everyday life. It's when you obsess, in detail, about what would happen if the roof fell in and who would live and who would die. It's when you imagine the trajectory of a bullet through the window every time you drive. It's when you have disturbing thoughts you can't control during sex to the point that being intimate scares you to death (dear Luke, you didn't know about this but it doesn't happen anymore). It's when you think of terrible, violent ways to die or get maimed as you cross campus because you truly believe that if you think of all the bad things you can imagine they can't happen because you were already expecting them. It's when you think you left the door unlocked and you spend several hours pacing in the living room in tears because even though you know it's safe your brain won't let go of the thought that there's someone with a crowbar or a gun or a knife hiding somewhere and he's going to do horrible things to you and mutilate your body but it's too late at night to call anyone about something you know isn't true and you check every nook and cranny several times before having a panic attack before going to sleep afraid and none of it makes sense because you know you're worried over nothing but something in your brain makes you paranoid in a way that feels so real. And in the morning you hate yourself and you feel crazy but you worry the next night, too, because what if the killer's just been waiting and really he's just waiting in the back of your brain.

OCD is like having a song stuck in your head. No matter how hard you try, you can't get the bad thoughts out. You just have to wait and feel nervous until everything magically becomes okay again. The worst part of OCD is that you know what's happening. You know you're being unreasonable. You know you're worried over nothing. You know the bad things you imagine won't happen. You know you're safe. You know you're being crazy. But the OCD makes it feel real and true, undeniably. What hurts most sometimes is that I know I can say this to anyone I want but unless the person has a brain that does the same thing they will never understand. Imagine, say, you're worried your mother was driving and got into an awful car accident. If you know your mother didn't leave her house and she doesn't drive. So you stop worrying. But if you're me, that doesn't matter. You know what you imagine couldn't have happened, but the emotional response and the anxiety are as if it did. It all feels painfully real though it isn't. It makes no sense, I know, but that's how it works.

OCD is when you tear your body apart with your teeth and nails because somehow the pain makes the anxiety disappear. I am never not in pain. My back and hairline and shoulders and chest and face are covered with small wounds, some of which have been there for literally years because I will never let them close because when they scab over I have to make the skin even or I feel nervous. My fingers are torn to shreds from biting the skin. When I dig too deep it hurts like hell and I know I should stop but I can't because I need whatever it is I'm digging for gone. One time my boyfriend physically held me back to prevent me from biting and the anxiety inside was so bad I could swear I would die. The discomfort is like nothing I can explain. But when I harm myself, I am like anyone else and it hurts and looks terrible and I feel incredible shame. There is no feeling in the world that's so confusing as being in incredible self-imposed pain and knowing you could stop but you can't because the compulsive part of you needs the pain. It needs the skin even. It loves the blood. It doesn't cry or hurt like I do. And I do.

This was once healthy skin. There was an "imperfection" on that spot that's protruding from my neck. It's protruding because I spent all day squeezing and picking at that spot until it was swollen and so sore I couldn't even sleep on that side. The disclorations on the chin area are (probably) permanent scars from skin-picking, also known as dermatillomania.

This another shot of the same welt I created in the last photo. The couple other red marks were also self-inflicted.

Looking back, these are my shoulders on a pretty good day. Most days my chest, shoulders, and the back of my neck are covered in marks like these.

These are how my hands look on a decently okay day. They're often much worse, occasionally much better. The very red, raw spots indicated bites that were too deep and caused a pretty excessive amount of bleeding. Spots like this will stay sore and make everyday tasks difficult for long periods of time, especially since as they begin healing I will feel compelled to reopen them. Compulsive biting is also known as dermatophagia.

I don't say this to start a pity parade in my honor. 

All I'm saying is that if you're "so OCD" because you really like to be clean and organized or you casually enjoy even numbers or something, please, for the love of God, stop and think for a second about what you're saying. This makes me feel how some people feel about saying "that's retarded" or "that's so gay"-- believe it or not, you're marginalizing real people. So yeah, for some people like you, OCD is a jokey colloquialism, but for some people it's the hellish world that their brain creates for them to live in.


On Dermatophagia
On Dermatophagia Part Two
On Dermatophagia Part Three


Kylie said...

Although I don't suffer from any form OCD, I completely agree that using it as a joke or some kind of attempt at being witty is just wrong. I'm always uncomfortable when people use serious issues in conversation like it's nothing, and to be honest it's quite offensive. Certain phrases like "that's so gay" I just do not stand for: I immediately let the person know that the use of the word in that way is offensive and homophobic. Another thing that comes up in everyday conversation a lot, and perhaps this only happens with me, is when people say that they must be getting Alzheimers because they forgot something. For this kind of thing it's not as simple as saying that that's offensive language... to some people there's nothing wrong with that. To me, I think it makes a serious disease (like you said about OCD) sound like a joke, and something that is not to be taken seriously. I personally don't know anyone with Alzheimers but that doesn't mean that I don't take offense. What if I did? What if I had a grandparent that was suffering with the illness, it would be a very personal and serious issue in my life, and for someone to just toss it around like a joke would probably bring me to tears.
Like I said, I'm lucky enough to not be directly offended by this kind thing in real life, but I can imagine how it feels and I'm sorry that you have to put up with this kind of idiocy on an everyday basis. And again, it's hard to say right away that it IS indeed offensive because it's not as "obvious" as a racial or homophobic remark, but I would encourage you to say something anyways, like you have by writing this article. This is amazingly well written and I love your blog to death Vanessa. I really hope we get to meet one day... I kinda want to be your best friend :)


lovejustice said...

Thank you so much for saying this. I think this about lots of things during the day where people say something makes them want to jump out the window or that they wish they could be anorexic to lose some weight. It makes me so enraged. Thank you for saying this and for saying it so well.

saturdayjane said...

Oh my good gravy, Vanessa, I've got dermotillomania too. Not to the same degree, I don't think, but I compulsively tear my lips apart (I have for years) and any tiny bump (small zit, ingrown hair, whatever) ends up being a huge issue because I pick at it and squeeze at like there's no tomorrow.

I haven't seen a doctor or therapist about I said, mine isn't severe, and sometimes the behavior can be redirected (I've learned to apply lip balm every time I catch myself trying to tear at my lips, though I don't always catch myself) but it's nice to know that there is someone who deals with the same thing.

Jem said...

Thank you so much for publishing this, My best friend has suffered from OCD for years, ever since we were really little, and I have seen her through the good and the bad. My bestie has been to therapy and taken meds but that still doesn't mean that she's "better." She struggles everyday. It irks me so much when people use OCD as a joke, their isn't anything funny about it. I really hate when people use serious medical issues as a way to sound funny- it lessens the way people perceive it's seriousness. I am so glad that you were able to write about your own experience with OCD, hopefully everyone can learn a thing or two from it. :)

Sydnie said...

I hate when people use OCD as a joke. It's not funny, and I know first hand (albeit mildly). If I scratch one of my legs, I have to scratch the other one in the same exact spot. It's not an option ... I have to. If I don't, I start feeling sick and itchy all over. Even writing this is bothering me. It's gotten so bad that I can hardly type on a keyboard because if all of my fingers don't have even pressure on each finger tip at the same time, it pretty much causes the same feeling. If I hit my knee really hard on a doorframe, I have to smack the other one too. It's embarrassing, and I completely understand how you feel. I haven't seen a doctor about it, and I'm not sure if I ever will. It's basically a part of me, and I can't see myself without my wierd habits. Great post!


ilde said...

Stay strong, lovely lady! You are an inspiration to many.

Kimbirdy said...

thank you!!! i know just what you mean. i have clinical ocd and i've been receiving treatment for it for the past two years. it's so frustrating to me when i tell people i have ocd and they say, "oh i know, me too! i can't leave dishes in the sink, i'm so anal about it." i sort of want to punch them in the face every time! and everyone responds that way - they all think they have ocd but they have no idea the anxiety i deal with on a daily basis or the intense inner struggle that builds when i try to deny my compulsions.

so really, i can't thank you enough for writing this. the whole way through i was shouting "amen sister!"

Kelly said...

Vanessa, I'm so glad but so heartbroken that you posted this. You are incredibly brave and strong and I know it must have hurt to write, but it was insightful to read.

I don't know what I could possibly say to this post except "thank you" and I hope your mind quiets down and gives you some peace.

amanda said...

Oh honey. Bless you for posting this.

We've talked about what it's like to live with OCD and dermotillomania before, so I know exactly what you mean. I also know exactly what you're talking about, checking the front door constantly because some angry little voice is screaming in your head that the door is open! It's wide open! And you're going to die in the next 2 minutes because the door! IT IS OPEN AND EVERYONE WANTS TO KILL YOU.
And then you start scratching, scraping, biting on the way to the door because you hope it will quiet the screams.

What I'm trying to say is: thank you. I love you. You're amazing.

Emma said...

You wrote this down really really well. It's so frustrating to try and explain how I, as a rational human being, can have such rational actions but you really got to it. You're right, unless your brain works in that way you just can't get it.

I *HATE* it when people go on about how obsessive compulsive they are. Or, worse still when they jocularly point out that i 'might have OCD' because I'm sharpening all my pencils. If that was the extent of it...

I've had a lot of help and have now come a long way to changing how i think. I know you can get there. All my love.

Vanessa said...

I just wanted to say, collectively to all of you, thank you for the wonderful, kind, intelligent comments. I appreciate you all more than you can ever know.

Zmaga said...

I admire your honesty and courage so much. Especially since I recognized bits and pieces of myself in this text. I don't hurt myself, but I often have terrible thoughts about what will happen to me, my family and friends. It's nice to know I'm not crazy and alone in it.

The problem with people telling jokes about OCD or any other disease is that they don't know anything about it or they can only see it in movies or sth when people "obsessively wash hands". They think that's all there is to it. I'm not saying it's okay, I just think that they don't mean to be offensive when they say it. Articles like your can really make a difference.

Katie, Interrobangs Anonymous said...


Erica said...

I just came across your blog from google, searching for people who also suffer from "Dermatophagia." I absolutely loved this entry & its title = brilliant.

Iggy said...

I'm new to your blog. But what brought me here is the search to find information on dermatophagia. I suffered from this for years. And the fact that now I know I'm not alone, have me in tears. For years I thought I was some kind of freak that no one will understand. So thank you for speaking out about this.
But what brings me to comment today is your blog on OCD. When I first learned that Dermtophagia was linked to OCD I was shocked. Because like you stated I believed in the stereotype, which is that people with OCD are neat freaks. And that's not me. But your blog on "Who are SO OCD" gave a clear account on something I have been suffering from for some time now. I constantly worry and think of the most randomly thing (all negative). Just they other day I had a bad thought that my sister was going to get kidnapped. I called and texted her all evening until she called me back. One time I stayed up all day because I heard a knock on the door. Although at the time my parent was first down stairs and I knew nothing will happen to me. And so much other things I constantly think and worry about. Mostly super natural things that out of human control. Hence it makes me even more scared and nervous. I always thought I just had a playful imagination and was a chicken (afraid of the dark, afraid to live alone, etc.) but afterward read your blog I am convinced that I too suffer from not only dermatophagia but OCD. Although, I am a little perplex that I might have OCD (because I don’t understand why I suffer them these things). I am glad that I’m not alone and I too can seek help. Please continue blogging about your journey to recovery. You have no idea how much your accounts are helping individuals. Once again thank you so much. Your blog brings tears to my eyes, because it’s a true account of how so many people suffer from dermatophagia and anxiety.

Side bar: Currently, I still eat my finger skin and bite my nail, but I have managed to diminished how often I do it. How? Can’t really say, just one day I focus and tried my hardest to stop and eventually it happened. BUT, I have noticed that it does become severe again when I’m nervous, studying, or just concentrating intensely. I hope to one day fully stop even if I have to seek counseling.

Anonymous said...

Thank you thank you thank you! I am 32 years old and I have had what I thought was "bad skin" since I was in 3rd grade. Recently I noticed that my chest, fingers, toes, back and chin get so much worse when I get stressed. I have also started sneaking around to pick so my husband will not notice. This post helped me so much. I read some of it to my husband and he asked "if you are OCD why isn't this place cleaner" (we are far from slobs) and I wanted to scream! I finally understand... How do I make him understand.

Anonymous said...

I am 11 years old and I also have the problem of eating my skin.I try to stop but can't and i just feel so much better that I am not the only that has this nasty habit.However, I just recently found that there was a OCD problem called Dermatophagia that i might have.I've had this problem since i was 7 and contiue to struggle with it but, hope to stop.

Anonymous said...

Thank you so much for addressing this! I know I don't have OCD (or most likely don't) but I definitely have some sort of anxiety problems. I tear off the skin on my lips constantly until they bleed, I can't stand the feeling of uneven lips (even though it ends up being scabbed and even less even). I compulsively tear the skin off my fingers (but that's actually genetically inherited from my mom). I also just have anxiety attacks that I know are usually unreasonable but I just freak out all by myself. And I really hate people who claim they have OCD and don't, I know 2 people who legitimately have it, and a huge group of people who pretend they do. They just overreact emotionally to everything and don't know how to deal with anything, or they just choose not to. They wreck a lot of friendships because of this and they need to understand that pretending to have these issues is stupid and it helps no one. I really want to send this letter to them, thank you.

Anonymous said...

I'm so happy I found this! I've suffered from Dermatillomania for as long as I can remember and have always been embarrassed about my legs and hands because of the severity of it all. I always have to tell people "Oh my fingers have just always been this way" because technically they have. There are so many people out there that honestly don't understand OCD and it's forms and have trouble trying to comprehend it. Thank you for this! And the pictures allowed me to compare to myself, which i'm thankful for. :]

Anonymous said...

Wow. I've had OCD (well I had the obsessive thoughts for much longer, but that's when the compulsions manifested) for the past 3 years, and I've had a lot of trouble not picking at my skin. I had no idea that was related... but the frequency always increases when i'm nervous.

Anonymous said...

Late to the party (clicked a link on reddit) but I just wanted to tell you that this is the first first-person account of OCD that made me say, "Exactly. That's exactly the way I feel and can never explain properly to anyone else." The things that I do, the straightening of all objects, the running my right hand along every wall as I walk, the pacing, the checking, double checking, and triple checking everything are often seen as "unnecessary" because I'm not going to die without it and it can sometimes be a small inconvenience to people around me .And I'll admit, if I'm forced to push off the compulsions a grimace won't even cross my face because for me the anxiety of other people knowing about my illness and judging me for it can be used as leverage against other anxiety.

But it hurts. It hurts my mind, body, and soul. The constant terror in has given me chronic muscle pain from tensing up 24/7. It's hurt my relationships with other people. It's hurt my quality of life, I can remember few times where I went a whole day with out a single moment of anxiety. Feeling like something bad is always going to happen to you is no fun and these things, these stupid little things that cause others such inconvenience are THE ONLY THINGS THAT CAN STOP IT. The only thing that will quiet the feeling that tomorrow a plane will crash in my backyard, or that a fire will start at work, or that if I stop deliberately focusing on breathing in and out I will forget and die (those are always some awfully paralyzing hours, trying to get myself out of that one) is dumping a bin full of buttons on the table and sorting them into some predetermined pattern given to me by god-knows-who inside my mind.

So I guess I'm here to say thanks. Thanks for giving me a way to describe these feelings to someone else (my own words always seem to fail me) and be able to say, "Yeah, it bugs you to have to put everything away in the right place. Deal with it, because I need you too."

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