“These fears are not my fears; they’re just a stranger’s thoughts that have snuck in and I need to show them the way out.”
An evil person has possessed my body, taken over my life and effectively convinced all of my loved ones that I’m still me and that I’m not actually missing. And while this person is living my life and speaking my voice, I can see and hear everything from behind this mask that looks exactly like me, but I can’t speak and I can’t move. I’m back there screaming, hoping that just one person will notice that it’s not me, that I’m gone, that I need rescuing.
It started small, with just someone else’s thoughts invading my mind. These little evil thoughts of fear and anger that I didn’t recognize. They snuck into my mind and stuck there, gaining more and more power as I gave them more of my attention. Then these stranger’s thoughts became actions and beliefs. And then this stranger became me.
So that I no longer feel like a human. I am just the host to a little scared monster that compensates for its fear by dragging me in and making their fear mine. Their actions mine.
Fear is a powerful tool and OCD is masterful at wielding it. It’s hard to explain how completely OCD can take over not just your mind but your body as well. Yet another way that it takes away your power, by making it almost impossible to put into words what you are experiencing. How life literally feels like a nightmare that you have no control over. And no one really hears you because you’re just a figment of your imagination. Because you no longer truly exist as you once did. Instead you are OCD’s puppet. A shell of who you once were. You now see through its eyes, eyes that used to be yours. And through them you see how your loved ones look back at you. Slightly confused as to why you seem different or if you’re even still there. They recognize you as you on the surface, but you’re not you anymore and they can’t figure out why, because what they can’t see is the stranger who has taken over.
And as OCD pushes you further back into the dark recesses of your mind, it becomes easier for it to convince you that what you think, feel, touch and see, is false. Until you can look down at your hands and not recognize them as your own anymore. They seem as disconnected to you as someone else’s hands. So now you can’t trust your own senses, but you can’t trust your captor’s; effectively isolating you from any sense of reality.
This is what I mean when I say that OCD has taken over my life. Not that it’s greatly affecting it, but that it has actually taken it. Every time my hands are washed, I scream and yell because I don’t want to be doing that. I didn’t tell my hands to wash. I know that I don’t need to be doing that, but they’re not my hands anymore. And not even I can hear the yelling anymore, not even I can see me fighting back anymore.
There have been times in my two year battle with OCD that I have been louder than the fear. And there are times when I’m not louder but neither is it. And even during this time when it seems like I will never be heard again, I have my moments when I am able to fight back. When I am able to feel present in my own life. But those moments take a lot out of me and I’m getting tired.
An evil, scared little monster has taken over my body. And the only way to fight back is to beat it at its own game. With fear. Scare it away, do the thing that it’s most scared of over and over until it’s lost all power over me. But to do that, I first have to convince myself that its fears are not my fears. They’re just a stranger’s thoughts that have snuck in and I need to show them the way out.
Fear is fear. My fear may be different than yours, but we fight it just the same.
Living with OCD is living with constant fear pulling at your mind. And I want to be clear, it is real fear, I chose that word purposefully. I did not say discomfort. I did not say annoyance. I did not say worry. I said fear. Try to imagine the absolute terror you would feel if you suddenly woke up in a dark cave. You don’t know how you got there. You don’t know how long you’ve been there. And now that you think of it, you don’t even know that it is a cave. You don’t know who or what else is in there with you. You don’t know what is going to happen next. And worse of all, you don’t even know what is reality anymore. It is that level of uncertainty and fear that is always with someone living with OCD. Constantly. And I truly mean constantly.
“OCD takes that window of uncertainty and runs with it.”
With every movement I make, I have at least ten what-if’s running through my mind. What do you think about when you’re walking to your car to go run some errands? Probably your grocery list, what you want for lunch, what so-and-so’s new Facebook status said. Did you consciously think about every step you took to get to the door? Did you think about every object you passed and whether you may or may not have touched them? Probably not. You most likely walk that path every day without a second thought. I walk to the door and each and every one of my steps is slow and deliberate so that I can know without a doubt what I’ve stepped on. And while I’m painstakingly monitoring the path of my feet, I am also trying to keep track of my elbows and my hands, making sure that they don’t touch something that my OCD has labeled as life-threatening. And while I am tracking my feet, elbows and hands, I am also trying to keep track of just how much I move my head in case the hair piled up into a messy bun might also touch something dangerous. And while tracking my feet, elbows, hands, head and hair, I am also looking ahead and trying to plan every step and every movement that will get me from point A to point B while avoiding all of the OCD traps. Now if you have ever tried this, you probably very quickly determined that it is not possible for your mind to actually track all of these things. At least not to the level of detail that the little OCD-brain-monster requires. So inevitably, before you can get to the door, you probably focused too closely on your left elbow, took a step, and then realized that within that step, you have no idea where your right elbow was! (Although if OCD wasn’t warping your reality, you very well know where your right elbow was. It’s attached to your arm and you have spatial awareness as well as a sense of touch, although OCD would like you to forget that). So now OCD takes this window of uncertainty and runs with it. Convincing you that since you were not painfully aware of where your right elbow was in space, you have no way of knowing what it touched. Therefore it could have touched something dangerous. So by the time you get to the car, if you ever do get to the car, you had to go wash your elbow, but let’s face it, what starts as just washing an elbow will most likely turn into a full-body shower. Because the fear you feel is as real and paralyzing as the fear you would feel if you woke up in that dark cave.
“It is amazing that you got out of bed today.”
If you have the tools and the support, you can fight this fear and OCD. But that’s easier said than done and some days are harder than others. Everyone battling their OCD will have their ups and downs. But sometimes it is that hard just to walk through your house. At this point in my fight it is that hard for me. So I am trying to change my definition of success. And as someone who used to be very driven and hold very high standards for myself, this is a very real struggle for me. This is why it is so crucial for people struggling with any type of mental illness to have someone in their life who is able to recognize and celebrate the small, yet not so small achievements. It is amazing that you got out of bed today. It is amazing that you got dressed. You won’t be able to do everything in one day. But don’t let the many little set backs take away from that one big stride forward.
6:00am – Woken up by anxiety. Close my eyes trying to silence the voice in my head that won’t stop saying “I can’t, I can’t, I can’t”.
6:15am – Alarm goes off. (Me: “I can’t do this again.”)
6:30am – Alarm goes off. Turn on the lights. Lay in bed.
6:45am – Alarm goes off. (Me: “I don’t know how many more times I can do this.”)
6:47am – Roll over, silence the scream trying to escape my throat.
6:50am – Drag myself out of bed. Walk passed perfectly usable master bathroom and use the guest bathroom instead, careful not to touch the wallet and keys I take to work. (OCD: “Your arm touched those!!” Me: “I’m 2 feet away from those.” OCD: “Nope, you definitely touched those.”)
Brush teeth. Spit. (OCD: “Your hair touched the soap dispenser. Now you can’t use that hair tie later.” Me: “I didn’t feel anything, it didn’t touch, I’m running out of hair ties.” OCD: “You just weren’t paying attention. Trust me. I know.”)
6:51am – Put makeup on. (OCD: “Your stomach touched the counter. You’re not supposed to touch that counter” Me: “Shut up.”)
6:55am – Turn on sink. Open shower door. Step into flip flops. (OCD: “You know you really didn’t wash those enough last night. You definitely missed a spot.” Me: “Just keep walking. You’re fine. You’re fine.”) Walk downstairs and place flip flops by the front door, ready for tonight.
7:00am – Wash my perfectly clean hands. Don’t turn off sink. Open dryer, put on my freshly washed work uniform. (OCD: “Careful. You know those aren’t clean.”)
7:03am – Put 3 pumps of soap in hands. Lather. Pick up debit card and ID. Wash them. Put in fleece pocket.
7:06am – 3 more pumps of soap. (OCD: “You better get another pump. That’s not enough soap.”) 4 pumps of soap. Wash keys. (OCD: “They touched the faucet. They touched the sink. THEY TOUCHED THE COUNTER!” Me: SHUT UP!”)
7:09am – Wash hands. (OCD: “Not good enough.”) Wash hands again. Wash soap dispenser. Wash hands. Wash faucet handle. (OCD: “Not good enough.” Me: “No please!” OCD: “The man you love is going to come home and use this sink. You going to let him use this sink like this?” Me: Shut up! I’m going to be late!”) Wash hands.
7:11am – Turn bathroom and bedroom lights off with back of right hand. Turn hall light off with back of right hand. Turn on house alarm with left hand. (OCD: “Your fleece touched the counter. It touched his charger. It touched the towel! Careful!!”)
7:13am – Turn off downstairs lights with back of right hand. Walk to front door. (OCD: “Your fleece touched the chair! Now you can’t sit there.” Me: “Well then where do you suggest I sit? The couch?” OCD: “No!” Me: “The floor?” OCD: “NO!” Me: …. OCD: “Better figure it out I guess.”)
7:14am – Open the front door with one hand. Make sure it doesn’t touch my fleece jacket. Shut the door with the same hand. Pull my keys out of my pocket with the other hand. Lock the door.
Take a step off the welcome mat, feel the wet cold start to soak through my socks.
7:15am – Open car door. Slip right foot into shoe, making sure my socks don’t touch the car. (OCD: “Your toes touched the car floor. Your heel touched the chair.”) Slip left foot into shoe. Get into car, drive to work.
Me: “Okay, I did it.”
OCD: “Ya but just wait til we get home. You’re going to mess everything up. You’re going to ruin everything.”
Me: …. “Please, just shut up.”
“I have an angel on the other shoulder, and she’s me, doing the best she can to be heard.”
I have an angel sitting on one shoulder. She has dull brown hair, blue eyes and glasses, and she’s not very tall. She’s barely visible, struggling to be seen, and when she talks her voice is soft, uncertain, she fights to be heard. She’s nothing magnificent but at least she’s there. Her look-alike is on my other shoulder. She’s bolder, her color brighter and her voice much louder. She easily overshadows the other, and often drowns out my own thoughts. She’s proud and always right. This is the one that tells me what to do, what to be afraid of. I have allowed myself to become controlled by her and by her fear. She interrupts my conversations to point out all the things I did wrong, all the possible things that could go badly. She’s the one that tells me not to touch something, or that I need to wash my hands, I need to wash them better, longer, more soap, again, missed a spot… She’s the one that feeds the spot in my brain that thrives off of doubt and what-if’s. The angel tries to tell me to stop. I can often see her trying to scream at me to stop washing, to stop avoiding, to stop listening to the lies. I see her mouth yelling, but I never hear her because the other one is drowning her out with a list of all the bad things that could happen if I do stop. All the bad things that would be my fault. And every time I listen to her instead of my angel, she gets stronger, a little taller, a little louder. While my angel disappears just a little more. Until she’s just a barely visible ghost of my old consciousness. Lately my angel has looked more tired than usual, a little less hopeful, and has started to give up on the possibility of ever being heard. But she’s still there. She never leaves no matter how much the other bullies her. Every once in a while her voice does get through. When it does, the other gets angrier and meaner and much louder. But if you look closely, that anger and loudness is just a cover up, it’s just a distraction in the hopes that the angel and I won’t notice that she got a little bit smaller while my angel got a little taller. But we do notice. And that’s why we won’t give up, because we know that we can shrink that fear and doubt back down to the size it’s meant to be. I have a devil on one shoulder, she’s my OCD doing the best it can to imitate me. But I have an angel on the other shoulder, and she’s me, doing the best she can to be heard.
I want to be able to go somewhere, to be with people, and still be able to pretend to be who I used to be. It’s the only escape I have left. It’s the only connection to that girl I used to be. It’s my last piece of “normalcy”. But that means that I have to keep a huge part of myself from those people.
So who do I tell? How do I decide who to let into my “now” and who to keep in my “used to be”?
I can categorize my interactions with others into three groups:
- Old friends who don’t know about my OCD. With them I can pretend to be the happy, less-burdened me. But it’s pretend. And no matter how good I am at hiding my fear in those moments, they can tell there is a new wall up. They can tell I’m not giving them all of me. There’s an added strain. And it hurts just a little bit, a dull ache, because I can almost get back to her, I can start to see that girl I used to be. But she’s just out of reach.
- There’s the old friends and family who I have told about my OCD. Now that’s all they see; the girl with OCD. Every interaction we have, every moment we share, even if not overtly, is affected by that knowledge. OCD is sitting between me and them. And there is no space for the me that’s left. And it’s no one’s fault. It’s just that they love me and they’re trying to find me again and they’re trying to fix something that can’t be fixed. I desperately don’t want to be the girl with OCD, so it hurts. Because the look in their eyes reminds me of how far away I am from the girl I used to know.
- And then there’s the new friends I’ve made who have only known me as the me with OCD. It’s a little terrifying, but it’s almost like a breath of fresh air. Because I’m not pretending. I’m not pretending to be the old me, I’m not pretending to be ok with the new me. I’m just me. To them I’m just me. They see me, and they love me.
So maybe it’s time to accept who I am. Maybe it’s time to stop hiding. But that’s easier said than done. Because no matter how determined I am to stop pretending, when I see my old friends, I long to just let them see me as the old me because I want to be her. And when I see my family I long to just let them see me as okay because they can’t fix me and because I want more than anything to be okay. These people are my only escape from this small cage of a world that OCD has created for me.
So I am hoping that eventually this blog will help me stop pretending and accept who I am. This blog scares me. I’m scared every time I click publish. But once I do, I feel a little more hope start to bubble to the surface. Because maybe I can learn how to be me. Maybe I can stop hiding. There’s no going back to who I used to be. But there is a way to go forward and grow into the person that I am now.
“OCD is a maniacally-laughing, uncontrollably disastrous imp bursting out of me.”
I have morphed into a black hole in the middle of the lives of those I love most, leaving a path of destruction and loss behind me. OCD is this maniacally-laughing, uncontrollably disastrous imp that bursts out of me and takes pleasure in knocking things over, pushing me down and controlling the people around me. OCD has lied and terrified me until there’s nothing left of me to give. It has taken away my sense of self, my sense of home, even taken away my belongings. It has told me to pack up my favorite copy of Wuthering Heights because it’s safer not to touch it. It has told me time and again that I can’t use those shoes, or those shoes, or those shoes… I don’t have things anymore. I don’t have place anymore. And it doesn’t just take from me. OCD took piece after piece of her house until she didn’t feel at home in it anymore. Until she could feel my OCD watching every move she made. Now it’s taking over our home, it took his favorite pair of shoes, and just last week it took his snacks for game night. It takes and takes and takes, and as it takes it just gets bigger. Until finally it takes me. It takes me away from them. OCD takes control of my mind and my body. It takes my sight and my sense of space. It can tell me I’ve touched something that I’m feet away from. It takes my reality. But worse of all it takes my connection to others. It took her sister. It took his girlfriend. It’s a black hole.
Even the areas that seem to have remained untouched by my mind are really scattered with OCD landmines. I can’t just walk down the hall, I have to dodge here, weave there, and turn sideways and scoot through a space that could truthfully fit two of me side by side, but somehow the walls have closed in so that now I can’t seem to fit. He looks at the house and sees a house. He has to get to the bedroom so he walks to the bedroom. I have to go to the bedroom so first I sit there and muster up the willpower just to get up out of my safe spot. I look at the path and I see the “narrow” space between the boots I can’t touch and the chair I can’t touch, and I see all the other previously harmless objects that OCD has taken from me. I see all the opportunities for OCD to take my reality and turn a simple walk to the bedroom into a draining trek that will usually end in frustrated tears and excess washing.
And after all of it’s taking, OCD continues to convince me that it’s me doing the taking. It’s me that’s slowly chipping away at their lives. All I do is take.
I went to a wonderful Holiday party on Saturday, one that I had really looked forward to. But what was my brain thinking about the whole time? Not the open bar, the Mac-n-cheese buffet, the live music, the 20’s themed ambience with huge sparkling chandeliers, the sequined dresses or the not-so-understated suits, and not even my handsome date. No, my brain was thinking about what I possibly walked on while going through the parking garage, what was on the wall that my sweater touched, whether I had bumped into that garbage can or touched the pile of trash across the street; my mind was tracking each time my favorite sparkling 3-inch heels touched my dress, his chair, my tights; my mind was making sure that my hands didn’t hang down too low and touch the sweater or the bottom of my dress, watching his hands and his jacket making sure they didn’t touch that chair, wondering if the hand I was eating with had touched that garbage can… I forgot to make myself smile and enjoy the party. I had to continuously pull myself out of my mind and remember that I was talking to someone and then try to figure out where the conversation had led us. I was trying to figure out the perfect balance between the open bar and the fact that I can’t use public bathrooms. I didn’t get to relish the rich and decadent desserts because while I was spooning the chocolate mousse into my mouth my mind was already back home, trying to figure out how I was going to get out of these tights that went all the way up to my bra, or out of this dress that was digging into my armpits, and get into the shower and clean my phone and wondering if there was any way that I could save my favorite, most painful pair of heels from my OCD (I couldn’t, they got left out in the garage with the rest of the shoe cemetery).
So I was planning to go to a magnificent party, but I didn’t go. Only a shell of me got to go, my mind was never really there.
I don’t regret it though. I’ll try again next year, and next year I hope that I can leave OCD and it’s annoying lies at home. I hope it will just be me and my hot date, an open bar, fancy clothes, and as much Mac-n-cheese as I can eat.
I haven’t felt strong lately. And you have to be strong to fight OCD. Because to fight it, you have to face it. I have to face my worst fear. But I haven’t been able to and I feel my world getting smaller again. And I can see his world getting smaller because of it too. OCD seeps out of me, strangling everything around me. And maybe it’s because I’m so close to having everything I’ve ever wanted that I haven’t been able to fight. It’s happened before, when I got the thing I’d spent my entire academic career working for; I got scared that I would lose it. So I did. My world crashed around me for the second time. I’m scared. I’m frozen scared. I can barely get out of bed because I’m scared of what will happen today. Tomorrow. I’m scared of what I might lose. So I haven’t been fighting and OCD has been getting bigger and meaner. It’s constantly hovering behind me making sure I don’t make a wrong move and convincing me that I did even if I haven’t moved at all. And I believe it. I believe every word it says. So I’m tired. And I can’t be tired if I’m going to outsmart OCD. Because to beat OCD I have to be stronger than it. I have to do the thing it’s telling me not to do, the thing it’s telling me could take away my happiness. I have to do the scariest thing I can imagine. And then do it again. And again. Until I’m not scared of it anymore. Until I can show OCD that it has no power over me. But that’s exhausting and requires a lot of willpower. Willpower that I can’t seem to find. But I need to find it. This fight isn’t just about me. Because OCD seeps out of me. So it’s not just about me.
What are you most scared of? What would it take to get you to do that thing? Every day. For the rest of your life. What would it take?
I’ll win again.
I beat OCD once, and by “beat” I mean to say that I maintained it. But OCD was always there, waiting to grab ahold of a small fear, to take control again. And it did. A new fear, a new place, but the same old safety behaviors. I feel angry, defeated, frustrated, and depressed. One of the hardest things about OCD taking back control, is having to tell your family that you lost. That you’re afraid of the invisible again, that staying inside all day is easier than dealing with the unseen and endless dangers of the real world. It didn’t matter how many times my therapist or my sister told me that I could not run away from my OCD, there would always be a piece of me that would hold on hope to that possibility. I thought I would be the exception, the one person who would beat OCD once and for all. But I didn’t. And this time my OCD had learned all of my tricks and come back stronger. I let that small seed of hope take root once again when I moved a month ago; thinking I could leave all the fear behind me and start over. Of course it followed me here, into my new clean house. It’s a disappointment that I am going to have to face many more times in my future. I will have to learn to accept that it is not a failing in me, but just a part of the fight. The fight that I will keep on fighting.