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What the Voice of My Obsessive-Compulsive Disorder Sounds Like

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I am flooded with thoughts. Sometimes they can be ignored; sometimes they are so “loud” I have to listen. When it comes to my obsessive-compulsive disorder (OCD), I struggle the most with intrusive, unwanted, and debilitating, irrational thoughts.

OCD is different for everyone. You may not know this from just seeing shows about OCD on TV or reading stories about OCD on the internet. You may think people with OCD wash their hands a lot, have to be very organized, clean fanatically, etc. But those are just the ways some people are battling with their OCD and those are the most visible. In my experience, OCD is very quiet from the outside looking in, because — and especially for me — it’s about the thoughts I know are irrational but won’t go away.

These thoughts are so frequent I decided to give them a name. I landed on “Frank.” I’m not sure why, and another part of my OCD is perfectionism. Without straying too far away from the topic of my irrational thoughts just to explain my struggle with perfectionism (I’ll save that for post #3), let’s just say I spent way too much time Googling “most annoying cartoon characters,” trying to come up with the perfect name. The search actually didn’t lead me to Frank — I came up with him on my own — but in my mind, I picture Will Ferrell’s Frank “The Tank” Ricard from “Old School.” I think this character fits best because Frank was at his core a kind person always trying to please everyone, fit in, but usually just got in his own way. My irrational thoughts are Frank.

OK, well, that was a lot of build up. The best way I can describe how these irrational thoughts really work (the perfectionism actually comes into play too) is to give you an ongoing personal example — I literally am struggling with this, probably as you read this story. It can become debilitating by being both mentally and physically exhausting.

So, here is a story of a car ride — exciting, I know. Just hang in there. I have been asked to drive a girl to her gymnastics school this summer, and pick her back up at the end of the day. It’s about a 30-minute drive each way — no big deal, right? For most people, right, no big deal, but not when Frank is involved. Here is our drive to the gym the other day. I have changed the name of the girl, because I am pretty sure that’s what you’re supposed to do. I didn’t change Frank’s name because that would make no sense.

Before getting to the house, I queue up the station “2017 Hits” on Pandora because I have no idea what kids listen to. I have my wireless hotspot set up, water, etc. These are all things I actually keep handy while I Uber and Lyft as well, but I did add a fidget spinner because kids like those, right?

As I pull up to the house, Frank begins to chime in.

Frank: “Make sure the music isn’t too loud and you pull up slow, smile, and wave!”
Samantha enters the car.

Me: “Hi, Samantha.”

Samantha: “Hi.”

After four hours of silence (OK, five minutes).

Frank: “Oh no, this is getting awkward fast. We need to think of something to say. Hmm… what can we say? What can we ask?”

Me: “How are you doing? Ready for your workout?”

Samantha: “Good, yeah.”

Frank: “Wow, what a wordsmith you are. OK, let’s think here, what can spark conversation. This is the third day we are driving, I got it, ask her about the music. This way, we can make sure we have the right stuff on. I mean she’s got to like this stuff anyway, the channel is called ‘hits.’”

Me: “Who’s your favorite singer or band?”

Samantha: “I really don’t listen to music.”

Me: “Oh, OK. Not a big Taylor Swift fan?”

Frank: “Dear God…”

Samantha: “No. Not really.”

Frank: “Change of plans, let’s just go back to awkward silence, it’s safer that way.”

I think you can get the gist of it. But this is what most social interactions are like for me, even among friends. Most of the time is spent by “Frank” trying to come up with the perfect things to say at the perfect moments, which is not how conversations work.

Now put me in front of a crowd and ask me to deliver a speech or give a presentation, and I am as good as gold because there’s no room for Frank. It’s in the quiet moments, the car rides, the alone time, the driving to meet a friend, the walking to a meeting, the “Dear God I have to make a phone call” moments where Frank becomes impossibly loud.

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Thinkstock photo via stevanovicigor

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The Personality Trait That Made Me Think I Would Never Be Diagnosed With OCD

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For as long as I can remember, I have been a nail biter and a skin picker. I didn’t know when I was a kid that there was a name for such behaviors. I just knew that when I was anxious or worried about something, my fingers became a complete bloody mess. When I finally saw a psychiatrist for the first time in my late 30s, I asked about this behavior as possibly being a symptom related to obsessive-compulsive disorder (OCD). She kind of rejected the idea, so I put it out of my mind.

I am chronically disorganized. My home is filled with baskets of craft supplies, piles of mail and magazines, stacks of coloring books, piles of dirty laundry, hampers full of clean clothes that have not been put away. If you explored my kitchen, you would find a beautifully organized spice drawer, dishes and glasses lined up in their cabinets, crumbs all over the counter and dishes in the sink. Because I was a messy person, I never imagined I would be diagnosed with OCD.

My new provider asked me curiously one day if I had any repetitive behaviors I engaged in. As I detailed my preoccupation with symmetry and my habit of counting while doing things like pouring myself a drink or putting on deodorant and mascara, she said to me, “I think you have OCD.” I immediately protested, “Oh, no. I am just a hoarder. I am not neat and clean enough to have OCD. I just have some weird habits.”

And then she asked me if I had trouble throwing things away. And I admitted that I did not. When my disorganized mess got overwhelming, I went on sweeping clean-outs, throwing away stacks of catalogs and donating bags of clothing to local charities and discarding expired food from my fridge. And she pointed out that someone who hoards doesn’t usually do these things.

Have you ever sat on your couch, looked around you, and felt paralyzed because your living room was messy and you just didn’t know what to do about it? Why bother starting to clean it up? It will never be good enough. It will never be perfect. Are you super organized at work but sort of fall apart behind the walls of your own home? Do ritualistic thoughts occupy large parts of your day, even if they don’t translate into ritualistic behaviors? Did you know these could all be OCD behaviors?

I am lucky that my current provider asked the right questions and recognized these symptoms for what they were. I am lucky that I am on a medication regimen that has been helping me. I never thought I would be diagnosed with OCD because I figured I wasn’t “clean enough.” It turns out that when OCD mixes with depression and anxiety, it may not look like you expect it to. And if I had advocated a little more for myself, it might not have taken me so long to realize that.

It turns out that help is out there, and you don’t have live in the clutches of OCD forever.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Ivary.

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Why Reassuring Someone With OCD Can Actually Be a Bad Thing Sometimes

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Everyone needs a bit of reassurance from time to time. It’s a human need. Maybe we need reassuring occasionally that our partner loves us, or that we’re doing a good job at work. But for many people with OCD, reassurance-seeking can become a compulsion, and one that keeps the cycle of OCD going.

We might need reassuring that our hands are clean or that we’re not going to harm a child or that we’re not gay or that we even have OCD. But once will not be enough. Like with all compulsions, we’ll need to repeat the exercise again and again. And while the reassurance will work for a bit, we may soon doubt the person meant it and need their reassurance all over again.

As with most OCD compulsions, it’s possible for reassurance to become an obsession. Maybe we’re afraid we might lose our job or that we’ll get a terrible disease or hurt someone. We can often ask for reassurance that the feared thing won’t happen. And once we’ve had that, our anxiety goes down, as with any compulsion. That’s why we do compulsions. But the anxiety soon comes back. And we can get stuck in a vicious cycle. Sometimes, we need more and more reassurance. It’s like a drug. And it can keep us “stuck.” We don’t find out what happens if we resist our compulsions. Instead it reinforces our belief that we need reassurance to deal with our anxiety. So we’ll keep doing it.

It’s hard to tell people not to reassure us. It’s a natural reaction. Our loved ones don’t want to see us in distress. They want to reassure us that they love us or that we won’t lose our job or that we won’t harm a child. But it can often be counter-productive. Ironically, I believe the best thing you can do for someone with OCD is not to reassure them. Tell them: “I’m not going to reassure you. We’ve agreed that is unhelpful.”

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Thinkstock photo via kevinhillillustration.

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OCD Vs. Perfectionism

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When you say “I’m so OCD,” you might mean you’re a perfectionist. Here’s how to know the difference.

Read the full transcript:

OCD Vs. Perfectionism

This is Rae. She’s a perfectionist.

This is Lauren. She has obsessive compulsive disorder, or OCD.

Rae tidies up her room before she goes to work and then goes on her way.

Lauren can’t leave her room until everything is “just right.” This causes her so much anxiety, she’s often late for work.

Rae’s friends make fun of her because she can’t eat lunch until she washes her hands first.

When Lauren washes her hands before lunch, it’s because she can’t shake the image of becoming seriously ill if she doesn’t do it repeatedly.

Driving home, a thought pops into Rae’s head that she might have hit someone with her car. Quickly though, she dismisses the thought.

When Lauren drives home, the same thought pops into her head. But unlike Rae, she can’t dismiss it. She actually turns his car around to make sure she didn’t hit anybody.

Before going to bed, Rae counts sheep. Counting calms her, and she’s able to relax and go to sleep.

Lauren’s nightly ritual revolves around the number three. Lauren finally falls asleep at 4 a.m. when the ritual is complete.

Everyone experiences irrational thoughts, and maybe even performs ritualistic behaviors, but for people with OCD, these thoughts are excessive, and these behaviors can take over their lives.

So before you say, “I’m so OCD,” remember that OCD is not an adjective, but a real condition that deserves compassion and understanding.

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How BPD and OCD Affect My Sex Life

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If you have a mental health condition, the chances are quite high that you will also have another one. In my case, I have both obsessive-compulsive disorder and borderline personality disorder (BPD).

Sometimes, having both is a good thing. I don’t have the impulsive behavior trait that many people with BPD have, such as drinking to excess or taking drugs (although I do self-harm) because my OCD is all about the opposite — timing, measuring and controlling things to an absurd degree.

However, I have a big problem with sex, and I think it’s so bad because it involves both my BPD and my OCD.

Because I have BPD, I fear people leaving me. In particular, I am often terrified my wife will break up with me. My OCD brain has decided that as long as we have sex once a week, we’ll stay together.

Like most of my similar OCD symptoms, this one started when I read a “rule” that then got stuck in my head and refused to budge. The first time my wife turned me down for sex I worried she didn’t love me anymore and might break up with me. In a panic, I Googled the topic obsessively, finding people saying if your partner doesn’t want sex often, they are likely cheating on you. I became convinced this was what had happened, but after a day of worrying, I realized she wouldn’t do that. But as part of my Googling, I had come across a “sex expert” who said he encouraged couples to have sex once a week as it was good for the relationship. As soon as I read it, that was it. The “rule” was in my head and if we didn’t do it once a week, we were in a bad relationship and she would leave me. I became so convinced of this that I developed a number of compulsions around it.

Having sex once a week is a compulsion, but it isn’t the only one. Planning sex is a compulsion. I know we don’t usually do it during the week, so every weekend I have to plan the whole weekend out in my head, working out when we will have time for sex. I also have to ask my wife if she wants sex that day and when she wants it. My OCD goes mad with the uncertainty of not knowing what is going on in her head. I simply have to know when she wants to do it. Even if she says yes, I have to ask again because what if she has changed her mind? I can never be sure. Simple things like her yawning or saying she felt full after dinner sets me into a panic — what if she is now too tired, or too full? I practically force her to take a nap if she says she was tired because I think if she has one she’d be more likely to want sex later.

As you can probably imagine, this makes for a very stressful sex life. My wife became convinced I had a high sex drive but in reality, it was the OCD telling me we simply had to do it to stay together. Once we have done it, I am fine for a week. I can relax and my BPD is satisfied thinking the danger of her breaking up with me is over for a week. We’d had sex so she must love me, surely? On the odd occasion she wants it more than once a week, I’m really disinterested, thinking we’ve already done it and so there is really no need, the danger has been eliminated. As soon as the next week comes around, I start to panic again. I’m constantly working out in my head how long it has been since we last did it.

The ironic thing is this stresses my wife out so much that often we do go more than a week and we haven’t broken up yet. But still my brain won’t accept the possibility that we can do it less than once a week. I’m worried if I don’t plan it out like this and keep track of it, we just won’t do it, and then we won’t do it the next week either and then we’ll never do it again and we will break up.

No other expressions of love satisfy me. It has to be sex. Nothing else convinces me of her love for me.

It often stresses me out, too. Sometimes I have literally been crying with the battle going on in my head — I really don’t feel like having sex, but my head tells me I have to do it to keep her.

As with all OCD symptoms, the only way to get over this is to resist the compulsions as well as being in therapy to understand my thoughts and feelings around it. With the help of my therapist, I resisted planning for or asking about sex for four weeks. It went OK and we had sex a few times during those weeks. Just after that, it got bad again. I realized I couldn’t remember the exact day we last had sex, and that panicked me because what if it had been weeks? I worried that because I couldn’t remember, it must mean it wasn’t important to me and that we’d just stop having it altogether and therefore break up.

Recovery is hard for anyone with mental illnesses, but when disorders overlap like this, it makes it even more difficult. I will get there, but it will take time.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Rawpixel Ltd.

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27 'Habits' of People Who Live With OCD

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While we usually talk about how mental illness affects us in ways other people can’t see, with obsessive-compulsive disorder (OCD), this isn’t always the case. Many (but not all) compulsions manifest outwardly, so whether you get up to see if the oven is on, tap three times to feel “just right” or wash your hands until they bleed, it can be hard to hide these behaviors.

So we asked people with OCD in our Mighty community to share with us “habits” they developed because of their OCD. Whether these habits are compulsions themselves, or manifest because of compulsions, they might held you understand what someone with OCD is going through.

Here’s what they told us: 

1. “Putting my money in denominational order, facing same way in my wallet when receiving change at the store. People behind me huff and puff about it but it will give me anxiety if I do not do it right then and there. My boyfriend now does it too but mostly because he has seen my reaction once when he went to pay for something.” — Ann L.

2. “Closing all the tabs on my phone, clearing all notifications and blacking out the screen. If I leave just one open or my screen on, it will continuously stress me out until I fix it. Seeing other people’s phone with just endless notifications and tabs open gives me so much anxiety, but I try not to look at it because it’s not my phone to fix.” — Sabrae M.

3. “Picking my skin. Dermatillomania. In my worst times I will dig/scratch out my freckles (like tonight). On not so bad days I wash my face and look for zits. It’s a compulsion I can’t really control. Even at work I’ve caught myself scratching, rubbing and casually picking. Especially in an uncomfortable situation.” — Chynna R.

4. “I ask indirect questions to people I know will give me the direct answers I’m seeking as validation to comfort/calm my obsessive thoughts/worries. I don’t ask direct questions because I know that will annoy people, especially if I do it repetitively. But if I ask indirect questions, I get the answers/validation I’m seeking, and it seems to annoy people less.” — Kaylie E.

5. “It’s really weird… but I spell. People have asked me time and time again why my thumbs are twitching and why my lips move after I finish talking, but it’s because I’m physically trying to spell out the words I just spoke. Strange, I know.” — Elisabeth A.

6. “I count every thing! Walking up stairs? Counting. In a room? Counting how many paintings, how many knick-knacks, etc. Eating M&Ms? Separating by color and then counting.” — Laura A.

7. “I buy things in multiples of two. Even if I only need one, I will buy two. It’s also about even numbers. Almost like Monk was in his show. I can truly relate to that show.” — Melody A.

8. “I type out words I hear on TV, radio and conversations on my ‘air keyboard’ with my fingers. I try to do it so low-key that no one sees me though… When I used to play the clarinet in school, when I would listen to the radio, I would ‘finger’ the notes I heard on my ‘air clarinet’… if that makes sense.” — Jessica J.

9. “I’ll pretend I’ve forgotten things so I can go back (repeatedly) to check locks/oven. When I was a kid, I vividly remember refusing to put away the dishes because the intrusive thoughts made me believe I was going to do harm with the knives.” — Jen L.

10. “I constantly check for phone, keys, wallet, etc. in my pockets, to the point that when [someone walks by me] it literally looks like I’m ‘[making] triangles’ with my hands. It’s a bit embarrassing and most the time I don’t realize I’m doing it until someone looks or points it out.” — Charli B.

11. “I feel like I am responsible for everyone I care about’s problems. If I see someone might be upset about something, I try to throw hints about something that will help and they always seem so confused, but I feel like if I can’t make them happy, then it’s all my fault. So I’m constantly feeling guilty if everyone I know isn’t happy.” — Kelly G.

12. “Checking things over and over. Even if you’ve already checked, you have to check again to make sure you were right. Or you have to do things certain ways/in certain patterns because if you don’t, you feel like something bad will happen.” — Erin H.

13. “Saying ‘I’m sorry’ even if I did nothing wrong. Whether it’s saying ‘I’m sorry’ to my family or friends, I often say it more than once and ask, ‘Are you mad at me’ along with it.” — Taylor C.

14.I say things, then mouth what I just said. When I get in and out of the car, I have to open and close the door twice. I sometimes wash my hands twice in a row and brush my teeth twice in a row.” — John R.

15. “Rewording the words I see on signs, flyers, billboards, etc. so they are rewritten in my mind without any vowels. I also live in a rural area and have to say, ‘Moo,’ the first time I see a cow in a day. (Doesn’t happen every day.) If I don’t ‘moo,’ something terrible will happen. That’s a real gem to try explaining.” — Jennifer R.

16. “Checking the alarm on my phone. I could have just picked it up and looked at it, but [fewer] than 10 seconds later, I have to check again to make sure I did actually set it.” — Sheryl F.

17. “I rehearse what I’m thinking of saying in my head and rehearse conversations, but sometimes without realizing, I might mutter or mumble under my breath while I’m doing it, making people stop and ask me what I said, or what I’m saying. That then makes me feel really awkward and I never know how to reply.” — Ka C.

18. “For family gatherings where we all pitch in and bring food, I can’t bring just one dish, I bring four or five. I can’t make a normal amount of anything, I have to bring excessive amounts of food because I’m afraid there won’t be enough.” — Debbie S.

19. “When I check out at a grocery store, my items have to be set on the conveyor belt a certain way. My kids have tried to help me unload the cart, and if they don’t do it right I get anxiety. They’ve learned to unload it how I like it. I honestly feel bad about this because they don’t understand what goes on in my mind, and that it’s my OCD and anxiety… I feel like they’re going to hate me when they grow up because of it. Like maybe they’ll feel like nothing they do is ever good enough… and that gives me anxiety… so a lot of times I will just do things myself to avoid me having to correct them and make them feel less than ‘perfect.’ I hate it.” — Jessica J.

20. “Tapping my pencil before every new sentence I write.” — Olivia R.

21. “Asking the same question over and over again. To the same people. Getting the same answer. In case I heard it wrong the first five times.” — Sam F.

22. “Counting change and bills multiple times, super noticeable when I was a cashier. 12345, 12345, 12345…” — Susan S.

23. “Freezing time. Avoiding tasks or just daily life by sitting/laying on the couch or bed. Freezing myself gives me a false sense that bad things won’t happen. You see lazy, I see ‘safe.’ If I don’t move, nothing bad can happen.” — Krissy M.

24. “Letting the majority of my house fall into filth because I’m obsessed with cleaning one room or area repeatedly for weeks until it’s absolutely perfect.” — Tara L.

25. “Wearing the same clothes every day because the previous day you wore them nothing bad happened and you hope that continues. I also tend to eat the same meals daily in hopes that nothing bad will happen.” — Jade M.

26. “If it looks like I’m not paying proper attention, it’s because my eyes are busy rolling around, outlining the pattern of what I am looking at as many times as it takes to feel comfortable! This could be 10 times over until I can find the strength and mind power to stop. Sometimes I have to leave it on an odd feeling because my tic was left incomplete.” — Jade G.

27. “I have lots of noise on. Especially driving. Talk radio, news, anything busy. It drives my husband bonkers, but these keep my intrusive thoughts away. Mine are especially bad when I drive. Some have been so bad I have to pull over, but the noise and distraction of news radio has really made a difference.” — Cassie B.

What would you add?

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