Soooo OCD

OCD is one of those acronyms we use when what we really mean to say is, “I organize my spice drawer alphabetically,” or “I always forget if I’ve locked the door or not, so I have to double check.”

Those things are … not OCD. So what does it mean to actually live with obsessive compulsive disorder every day? We asked you, the Terrible community, to share your stories.

Transcripts may not appear in their final version and are subject to change.

Rachel (OCDishell): Hey Nora my name Rachel. I… struggle With OCD every day. Every hour. Every minute. My big fear is that… my three kids are going to die all at the same time. And I imagine it in my head… graphically… happening. [sigh] Just thinking about… just– just thinking about it puts me into a panic. I want to start over with this because I don’t– I don’t know how to articulate to someone without OCD what OCD is like. [MUSIC]
I’m Nora McInerny, and this is Terrible, Thanks for Asking. We got this message from Rachel, and we were like, yeah. How DO you communicate the OCD brain to someone who doesn’t have OCD? How do you get people… honestly like all of us who like to say “I’m soooo OCD” after they organize their spice drawer…to understand what those three words feel like to actually LIVE. Because it’s a hard thing to understand and not just for even for Rachel. And she’s living it!
Rachel (OCDishell): The minute I wake up… my brain says to me… “what if it’s today what if they die today what if they die today” and so… I don’t like to take them places… all in one vehicle. I’m freaked out for my daughter… to join my older two kids at school. Oh gosh. This sounds so dumb. It sounds so dumb! I Know it’s dumb I know how dumb it is. I know this fear isn’t logical… but you can’t use logic with an OCD brain. I think a lot about hidden illnesses. The ones that you can’t see. Mental health is often in that category. OCD is often in that category. Those of us who don’t have OCD talk about it casually. We assume that OCD is just people who love cleaning, or who close the door often. Or who just worry too much.
Rachel (OCDishell): I would love to come talk to you and be honest… about what it’s like living with OCD.
A lot of our best ideas…come from you. And this is one of them. Rachel didn’t come in to the studio. Instead, we had her and a few other volunteers who have OCD… share what one day in the life of having OCD is like. We all agreed on a day, and these three people each turned on their phones and shared what was happening with their OCD throughout the day.
This episode is Rachel’s experience…
Rachel (RachelH_OCD2): I can’t believe I’m saying this out loud because I-I worry about… people not understanding what this is.
This episode is Alix’s experience…
Alix (Introduction): My name is Alix. I’m 27 years old. I live in North Carolina and I’m currently a short story format editor for a literary journal.
And this episode is Teresa’s experience.
Or, a day of this experience. On one day in August of 2018.
Teresa (Intro): Hi. My name is Teresa Bernstein and… I’m 59 years old. And I have OCD.
ACT II – THE DAY STARTS
Teresa lives in Oklahoma City. Today… she’s up early.
Teresa (535am): Good morning. This is Theresa Bernstein. And… it is 5:55 in the morning. I got up early this morning and took my daughter to the airport… which went Okay. My goal was to get back home… before my normal wakeup time of 5:45 so I could be like… like my normal routine not be touched at all. I didn’t quite make that. So I’m a little agitated. But… I’m OK. So I’m fixing my coffee and… about to sit down with my dogs. So here I go trying to get my little routine in order this morning.
Teresa’s son lives in Portland, Oregon, but is about to move back to Oklahoma City. This morning, Teresa dropped her daughter off at the airport so that she could fly to Portland, Oregon to drive her brother back home. That means that Teresa’s two kids are about to be on a cross-country road trip together.
Teresa (645a): It’s… 6:45. I’m a little panicky. I intentionally didn’t tell my daughter to text me when she was getting on the plane. And I held out as long as I could but I texted her… and I haven’t heard back so… now my brain is just going a thousand miles an hour. What is she went in the bathroom and somebody hit her over the head? What if she fell asleep and misses her flight? Oh. So… what is OCD? Well… OCD is exactly what it says it it. To understand it, just look at the words.
Hans: OBSESSIVE
You have unwanted thoughts, fears, worries, impulses and mental images. They are always disturbing and often graphic. They are impossible to ignore. And they keep coming back.
Hans: COMPULSIVE
You have physical behaviors that you go through to try to control the obsessions.
Hans: DISORDER
When the compulsions significantly impact your ability to function in your daily life.
That’s OCD. It’s like a mix and match of different obsessions — your children dying, a plane falling from the sky — and compulsions — tapping something to make sure that obsessive thought doesn’t come true. Chewing your food 100 times before you swallow. There are a lot of ways for these things to combine and create OCD.
But the obsessions is what kicks it off. Persistent. Horrible. And relentless.
What is she went in the bathroom and somebody hit her over the head? What if she fell asleep and misses her flight? [REPEATS AND BUILDS]
Oh. Then… on top of that last night we had a really bad storm in Oklahoma and… lots of water rescues and that kind of thing. And now I’m starting to panic… I live 10 minutes from my work and I leave 45 minutes before it opens. We open at 8:00 and I make sure I’m there by 730 every day. And… now I’m starting to feel like oh my god what if there’s trees down between here and there? What if a road is closed for some reason I don’t know… and I don’t get there on time. [huge agitated sigh] Oh ok. Oh she– she texted back. Hold on hold on. “Yeah just waiting to board.” Okay. Okay. Whoo, well… okay so that’s okay. So now I can just panic about getting to work. Oh god. [MUSIC]
OCD is not…consistent. And Teresa’s has changed over time. She wasn’t ALWAYS the kind of person who imagines that her daughter has been struck over the head in the airport bathroom.
Teresa (Questions): In my younger days when I was– had young children and… was a stay at home mom… it sort of presented itself in almost like a cute way. My house was immaculate always. And I had a label maker and you know labeled drawers and… just everything. But everybody thought it was adorable and… it didn’t really hurt anything to be that way. In fact it was productive. But then… I had some tragic life events. I lost both my parents I lost my husband to suicide… and then my daughter at 26 was diagnosed with cancer. And… after that… it sort of took a turn towards the not healthy. In more recent– the last about year to two years… it changed to what the doctor calls catastrophizing. Where I am constantly and I don’t… I can’t say that word strongly enough I mean… constantly… thinking about horrible things that could happen. And it can be something like… I could get in a car accident… and it’s not that I’m afraid of dying. It seldom has to do with me being injured. It has to do with me having to cope with the crisis. It’s always a plane could crash in my… and I feel like I want to cry just talking about it [choking up]. A plane could crash in my neighborhood and what if I see someone die? Or… what if an animal runs out in front of my car and I hit it? Or what if I get a call and someone I love is dead again? And it just never stops it never stops. And it’s exhausting.
It’s exhausting even though Teresa has a good doctor and takes medication. This is still what her days are like. When I go to work I just get in my car and I truly, most of the time, don’t even notice that I drove there. My body just takes over. Teresa’s commute is like, her brain driving. Or, trying to drive.. Teresa (734am): Whew. Teresa Berenstein again. I don’t know if I’m supposed to say my name every single time but… whatever. 7:15 I got out. Everything going good so far. [driving noises] On my way to work everything looks pretty good. There are definitely some trees down but… nothing I need to really super panic about so… everything seems to be going along. Fingers crossed. Now I’m worrying about… it’s like if one… issue gets solved… or… like one thing that I’m worrying about is proved to be okay… my brain just instantly goes okay yeah well what about… what about your son? You know he– he said he was going to a… going away party last night. And he even told me when he told me that “do not check on me in the morning. I’m going to be hung over and I’m going to sleep in. I’m fine.” And… I’m sure he’s fine. I’m sure he’s fine. And I just keep telling myself that. You know, but… those scenarios just keep entering my head.
[MUSIC]
While Teresa is driving to work, At the same time… about 350 miles away in Kansas City… Rachel is up and starting her day. Rachel was diagnosed with OCD at age 16, but started to experience it much younger. Now, she’s a mom to three kids, and mornings mean…school drop off.
Rachel (745am): I am… going to take my daughter to school. Say hi. [Daughter off mic – “Hi.”] You always use that funny voice. She is 13 and she’s awesome. Hey Lu how would you say OCD affects you? [Daughter off mic – “I don’t know”] She worries about me a lot. [Daughter off mic – “yeah.”] A lot. So… I have to tell her that I’m the adult and she’s the child… how does it affect you the most Lucy? [Daughter off mic – “probably that.”] Probably worrying about me? [Daughter off mic – “yeah.”] Yeah.
[MUSIC TRANSITION]
Rachel (805am): OK. Shut your door. [Door slams] Thank you. Lu is my partner in crime. Aren’t you? [Daughter off mic – “sure.”] What OCD things do I do that you notice? [Daughter off mic – like you’re always… oh… taking out the recycling.”] Taking out the recycling. So if we have any recycling I can’t wait… [Daughter off mic – “even if we go… are going to…”] [laughs] Stop it. So. If I’m going out anywhere… I take the recycling. [Daughter off mic – “sometimes She goes out just to take…”] Sometimes they go out just to take the recycling there’s a recycling bin at the end of the street. And I cannot relax until the recycling… all of the recycling is out of my house. But I am not… [Daughter off mic – “why can’t you relax…”] So my husband always jokes… why can’t I be the OCD cleaning kind. [Daughter off mic – “you are, though.”] I’m not. I don’t… so when people think of OCD they think of only… they think of only the cleaning kind. But people who have cleaning OCD would tell you… you don’t want it. Because it’s… you can’t relax… until you’ve scrubbed the bathtub for five hours.
Rachel (805am): [01:03:54] OK Lou I’m going to drop you off here. I love you. Have a good day. Are you going to you’re walking home yes? Yes. As usual. Like I’m not going to pretend that I pick you up. It’s three blocks away. Have a good day. Bye. [Lou gets out of the car].I worry about that girl. She’s walking away, violin in hand. She’s still got a backpack with her name on it. She just doesn’t really care what anyone else thinks. I love that about her. But I worry… there she is I’m pulling up alongside her… there’s another wave. I worry about what my mental illness does to her. Because she… I think she has some of the same tendencies.
[MUSIC]
In North Carolina, Alix is up. And so is her OCD.
Alix (859am): Good morning. It is 8:59 AM… and it is a beautiful day outside which… oddly enough can set me on edge. I usually fare better when it’s overcast… and I wish I had some poetic reasoning for that but I think it’s just a quirk. I’m feeling cautiously optimistic about today. I think that’s the best I can do. I slept horribly. And if I don’t sleep well I tend to be more anxious and compulsive and I’m worried I’ve set myself up to be in a pit of anxiety. I’m anxious about being anxious.
There isn’t just one kind of OCD. OCD can manifest in very different ways for different people. From cleaning rituals, to religious zealotry to hoarding to even pedophilia. For Alix…
Alix (OCD Presentation): My OCD presents itself in two ways. I struggle primarily with pure obsessional OCD which means I deal with a lot of frightening intrusive thoughts and images and those caused me to do a lot of internalized rituals. So counting or repeating a word a certain number of times or rereading a line until it feels right. I also struggle with physical ritualizations and compulsions. I am… a major counter. So I count just about everything I do in multiples of 4.
Rachel is also a counter. And that’s what she’s doing, back in Kansas City, after dropping her daughter off at school.
Rachel (904am): [Car radio]. I’m listening to the news it’s 9:04. I’m headed to target to get school supplies for my kids. Six months after the Parkland’s shooting… kids are back in class. So I automatically do taps on my steering wheel. Just three. Three sets of three. And apparently that’s going to ward off a school shooter. But… that’s what my brain tells me to do..
But… it’s– so I’ll do things in three. I’ll go up and down the stairs three times. That happens usually if it’s late at night and I’m trying to ward off a home invader. I will… reading is hard because I… sometimes… just like my… that… switch in my brain will flick on and… I’ll have to read a paragraph over three times or… if I get to a certain word… again… and I read it three times. Then I have to do another ritual to offset that. Because… the anxiety that spikes if I see that word three times. So OCD… I’m obsessing over seeing that word… and then the compulsion is… something… so the– the anxiety has risen to a level where I’m doing a compulsion performing a compulsion… to get the anxiety to go down. The problem is… with OCD… the more you engage in compulsions… the stronger you make them.
Rachel has another form of OCD, called harm OCD.
Rachel (904am): And in high school I had that harm OCD it’s called… that same stuff where like I would imagine myself stabbing people. I would imagine myself… hurting myself. It was awful. And I wanted to die in high school. And then I was 16 and my mom finally took me to a psychiatrist and he said let’s– “I think I know what’s wrong. Let’s try Prozac” and for me Prozac was the first thing that worked.
And when she was pregnant with her son, it got really bad. Rachel’s previous pregnancy had been twins. One died during pregnancy. And her daughter was born with complications. Rachel was convinced it was because she took Prozac while pregnant, so she went off all medication during this next pregnancy.
Rachel (904am): And it was a… it was an unmitigated disaster. So I remember standing at my… OK I’m going to tell this I’m going to tell the truth. I remember standing at… our old house see I don’t want to say this. I don’t want to say this because… once it’s out there… what are people going to think about me? I think about that on one hand and then on the other hand I think how many other women have… have had this experience but couldn’t say… one fucking thing because they’re so afraid of the judgment of other people. Or… they’re afraid of getting.. psychiatric care because what if someone takes their kids away. So I was mopping. And my daughter Lucy… was two. And she was standing next to the mop bucket. I was 37 weeks pregnant she was standing next to the mop bucket. And I had this image this vision… I don’t know what it was of… me drowning her in the mop bucket. And I just I– I can still hear the sound of the… of the mop handle hitting the tile floor and I just grabbed her. And… you know it just gathered her up my arms I called my doctor. Went to the doctor and I said “I am not well.” I was trying to figure out a way that I could tell my doctor that I had had this thought… that I was having these thoughts… without telling her. So I said I’m not well. I’m really worried about the baby. And I’m worried about… Lucy and she said “well what do you mean.” I said “just that I’ll be able to take the best care of her” and she said “well you’re doing fine. Every mom is nervous… you know before their baby is born.” And she was… kind of gathering up her papers and ready to go and I grabbed her arm and I said “OK I have to tell you this.” And I told her what I just told you. And she said “OK you need to have this baby now.” [MUSIC]
ACT III – THE ORIGINS
OCD affects 2.2 million adults in the US. OCD mostly manifests in teenage years. But one-third of people who have OCD first experienced it in childhood. Like Teresa.
Teresa (Questions): My parents… talked about when I was little I… rocked a lot. I would stop and go sit down and rock myself for a while. I’ve always liked to count things. And Alix, who first remembers OCD at age 5.
Alix (First Presentation of OCD): I had this bedtime ritual where after my mom put me to bed I would get out of bed and go to the light switch and… I would turn the lights on and off twice and I would have to get from a light switch was– which was at like a clear diagonal from my bed and across the room… and I’d have to run from there… and I would have 15 seconds to get into bed under the covers and position my body in a certain way… because for some reason I thought that if I didn’t… the house would burn down in my sleep and my family would die but I would survive alone.
[MUSIC]
Alix (1128am): It is 11:28 am I’m in my bedroom again. Currently pacing left or right alongside my bed on a carpet that I bought for this purpose. It’s very fun colored very bright and airy and I got it because I do this compulsion so often that I thought maybe it would make it easier and lighten the mood. I’m breathing very heavy because I have messed up this one compulsion about two times already. So my anxiety is easily at an 8. The compulsion is pacing… but I have to count my steps and I have to count to four 16 times through those steps. And if I mess up I have to start over. Sometimes I can be here for two minutes and it’s done. And sometimes I’m here for maybe five to 10 to 15 minutes if I keep messing it up. I don’t know how to explain it when you mess up a compulsion it feels like… the center of your chest is going to explode out of your body and you are going to lose control out of all these small things throughout your day you’re trying to control. I’m doing this to keep my sister safe who’s currently driving. And I’ve messed it up twice already. Now I’m fully convinced something bad is going to happen. Here’s hoping I’m not here all day. It sometimes feels like that when you mess up it feels like you could just be stuck on this loop that you can’t break free of. And that’s actually pretty terrifying.
There’s this rhyme that kids say. That some kids say. Or used to say. Do they say it anymore? My kid just said it to me the other day and I was concerned that I had taught it to him! Step on a crack, break your mother’s back
Step on a line, break your father’s spine.
So that’s horrible. Like most kids rhymes are horrible. But… it’s a mental place that is recognizable. Like hating odd numbers. Or, okay, when I was a kid, and honestly into my teens, I would need to press my fingertips down — one at a time — one push for every syllable in a conversation. I just had to do it. It felt good, and important. Or, for a time, I would alternate which leg stepped over the concrete seams in the sidewalk. And if I stepped over two in a row with one foot, I just felt…weird.
But here’s the thing. For most of us, it’s just a pattern that feels important. For people with OCD… if they don’t do some compulsions… someone will get hurt. Or die.
Rachel (1040am): When I was 5 our family’s good friends… all of them died in a single engine plane crash. One of my earliest memories… was my entire family… sitting in the kitchen and everyone was crying my parents were crying and my three older brothers were crying. And there was nothing I could do to stop that. I remember looking around and thinking… there’s no way to fix this. And I think that’s when my OCD brain got triggered and it was like OK… I’m going to perform all of these compulsions. so that no one in my family dies. Research is starting to say that OCD has deep neurological and biological roots. And is genetic.
Rachel (1040am): So my OCD comes from my dad’s side. And my grandma suffered with it greatly she… she was the cleaning OCD type. And she would have to check the stove. And make sure the windows were shut and all that multiple times before she left to go anywhere. When she was in her 70s. She… had to be admitted… to the mental ward of our local hospital. Because she was so depressed. I remember going in there as a little girl… and I was probably eight or nine at this time… and just you know her sh– her hair wasn’t curled up or anything she was just… she looked so… vulnerable I guess. I want to tell– I want to… I remember her just sobbing sobbing “I don’t know what to do I’m so sad I’m so sad. I just want to die.” And seeing that as a kid. I wish I could to have a conversation with my grandmother… saying… “you weren’t crazy. You always thought you were crazy you weren’t crazy… or if you were crazy, I was crazy too.”
Imagine Rachel’s grandmother, thinking she was crazy, that she was the only person doing the things she was doing. And then think about her granddaughter, Rachel, and her own compulsions. Which she HAS to do. Right now. Rachel (1040am): I’m going in to take my recycling. So I don’t have any recycling in my house. It’s the recycling… it’s a big yellow recycling box and it’s… in the parking lot of a dental office so I’m sure the people that work there like “oh here comes the crazy lady again [laughs]. Why doesn’t she just pay for recycling?” I do pay for recycling. We have a recycling bin that comes every week. But… apparently that’s not good enough. I can’t even tell you why I do this. I’m not someone with… cleaning OCD. I just like to have a recycling out of my house. I think with OCD it’s all about control. I can’t control whether or not my kid gets shot in the school shooting. I can’t control whether or not… my husband gets cancer. I can’t control so many things so I control these stupid little things. But I don’t control them. It’s my mind telling me that… I have control when really I don’t. But sometimes these compul– compulsions are tied to other things like I’ll say– or I’ll get the thought… you have to take the recycling this morning… or Scott’s gonna die on his way home from work. And then if I didn’t take the recycling that morning… and Scott’s five minutes late… then I’m sure he’s died because I didn’t take the recycling. It’s not lo– it’s not logical.
[[[MIDROLL]]]
[MUSIC]
Teresa (1224pm): Hi, it’s Teresa Bernstein. It’s lunchtime or so and I’m taking a little break sitting out… in front of my clinic… and well really behind my clinic. It’s been an OK morning. Super super busy. Which is good for me because it keeps my mind off… myself. I have had the… flight path up so I’m watching my daughter’s plane fly to Portland. Alix (203pm): [sound of water running] It is 2:03p.m. I’m currently in my kitchen… attempting to get lunch together. Right now… uh this is one of the… one of my things that take up an ungodly amount of time and I don’t really notice it unless I’m really counting it. I have to let the water from the kitchen sink run for 60 seconds before I fill my water bottle with it. And when it is finally filled I have to add ice cubes and when I do that… there has to be 12 ice cubes. And I have to get the ice cubes in the bottle… two at a time if I grab three and I put three in on time I have to start the whole process over again. I feel like this is one of the things that for any– anybody who doesn’t have OCD this is a pretty simple daily task. Hydration is a simple task. And yet it’s something that I’m completely fixated on and obsessive about and it’s frustrating especially when you do it… oh 60 seconds… multiple times a day. [sound of ice being added] It takes a huge chunk of time and I try to ignore how much time it takes up. [water out] I try to… push it to the back of my mind because if I really were to sit and count how long I spend… doing this a day I’d probably be… horrifically embarrassed which I shouldn’t be I can’t help– I can’t help it.
Alix’s brother died six years ago from sudden arrhythmia caused by accidental medication toxicity. he was 23. She had experienced OCD before then. But the suddenness and trauma of her brother’s death really affected her.
Alix (340pm): And since then my brain just keeps replaying the day of his death… and the intrusive bit of this is in the fact that I feel like I can’t stop it. Because if I do something may happen to my sister. So it’s just like this reel of film over and over and over again and I have to just sit and watch and hear everything like it’s really happening a second third fourth fifth sixth time. And my brother he had severe OCD as well. It was this shared struggle we had together. And of course that further complicates things. And some part of me feels like my OCD now is tethering us together in some way. And I do want to get back into remission. I don’t want to spend my days counting and pacing and checking. But what scares me about remission is that this shared bond we have would diminish and some bit of him that survived through me would fizzle out and that tether would be cut. Grief is weird. OCD makes grief weirder.
Rachel (424pm): It’s 4:24 all the kids are home. And I usually have the hardest time with anxiety… at this point in the day and the OCD flares. I think because… why do I have more anxiety at this time of the day? Do you guys know? [Daughter off mic – “because we get home?”] [laughs] My 13 year old daughter said “because we get home. [Daughter off mic – “and then we fight”] And then they fight yes that is true. [Daughter off mic – “but we’re not fighting today”] They’re not fighting today. It’s a good day today. Tomorrow the younger two start school. And there’s anxiety around that. And I’m sure tonight… can you please stir the macaroni Lucy? I’m thinking tonight will be full of… nervous compulsions before I go to bed so a lot of… up the stairs three times down two [yelling] why are you writing on your face with the marker stop. You know that’s not right. [Kid off mic – “okay!”] Oy. A lot of worrying. I’m going to step outside. A lot of worrying over whether or not… they’re doing okay their first day of school so… I’ll probably check the locks a lot. you know there’s always that question what would your one wish be and my one wish… would be… just seeing… what it would be like living a day without anxiety. If I don’t follow through on a compulsion… I… I feel like that feeling that shot of adrenaline you feel when you’ve… narrowly Missed a car wreck and I’ll feel that for… probably a good 20 minutes after not following through on a compulsion that’s actually… it’s pretty brutal. it’s lonely. And it’s not a lot of fun to talk about. And I… I don’t want people to feel sorry for me but I simultaneously… want people to have more compassion. I guess that’s why I’m doing this. Because in the 1980s when I was growing up my parents didn’t know what the heck was going on with me. You know now now when I see it on my own kids I can recognize it for what it is. I think that’s so powerful. I think… that that shared experience is so powerful. Because I– I think as a kid I would have given anything just to know that I wasn’t alone. And that I was understood.
Alix (447pm): It is 4:47p.m. and I’m outside for a walk. I… started getting anxious thinking about something and intrusive thoughts kicked in. I imagined people listening to this and people coming to conclusions about me and I know some people will think how does this person even survive day to day? And honestly I’m not sure. I just do. I just show up to the best of my ability. And we’re all here we’re all occupying the same space as those without OCD. We just navigate life differently. right now I’m looking at the foliage in front of me and it looks dry but beautiful… and my eyes and my brain… are sectioning it off into fours. Moments like this I wonder why were judged so harshly. We’re just human. We have likes and dislikes we have doubts and passions and are made of the same things we just have… a different presentation of our humanity.
Back in Oklahoma, Teresa has just gotten home from work. She’s sitting on her back porch with a glass of wine.
Teresa (609pm): Well, good afternoon. This is Teresa Berenstein. And… my daughter got to Portland. They just texted and then called me… that they were officially on the road. So they’ll drive all night so… huh. But… I’ve been using my self-talk all day that I have– I raised two capable smart… humans they’re 31 and 33. They’ve been all over the world, both of them. And they know what they’re doing. I still have like a thousand… just scenarios running through my head. My therapist once said “everybody has bad thoughts. Think of each thought as like a cloud that’s floating through your mind and you just you’ve got to push those clouds… on their way. Don’t let the thoughts stick. Don’t let it become like a big thundercloud. Just keep pushing them through and think about something else and keep yourself busy.” She did tell me last time I saw her… that I need to think of something every day that’s outside my comfort zone and make every effort to do it. So today I got gas on the way home from work so that threw off my evening timetable by about 10 minutes and I know that doesn’t seem like much but it’s more than just getting gas. It’s… now I… instead of going straight I had to turn left and then to go home I had to turn left again and there’s a lot of traffic and what if someone hits me or what if I hit someone what if there’s a pedestrian and I hit that pedestrian? It’s it it’s on and on and on. I mean it’s even to the point like what if I accidentally spilled the gas and it catches on fire and then somebody catches on fire and it’s… and those are the thoughts that I have to constantly constantly push out of my head. So anyway it’s a beautiful evening. The sky is really blue after last night’s horrible storms. There’s a very slight breeze it’s about 85 degrees. And my wind chimes… chiming just a little bit my flowers are blooming like crazy all around me. My favorite thing. I don’t have any birds here tonight but that’s probably because of the storms last night. We also have a lot of hawks who like to eat the birds for dinner. That’s a different issue. But I’m going to go snuggle my pups and decide what I’m going to have for dinner. And I hope everybody’s doing OK tonight.
One of the things that we heard from everyone… over and over… is how exhausting it is to have OCD. To have the constant intrusion of obsessions. The grinding schedule of rituals.
Alix, for example… no matter how tired she is… her rituals go on late into the evening. And it’s not just the regular ones that can derail everything. There are SOME obsessions that just arise, out of nowhere. And when they do, she HAS to act on them. The compulsion takes over. Alix (617pm): It is 6:17P.M. I just experienced one of my most aggravating compulsions. And it seems so minuscule that others may go “that thing? That little thing bothers you?” But by God it frustrates me to no end. If I see a post online and it doesn’t matter where it could be an ad on Facebook an ad on a webstore… a post by a friend on Facebook a post by a friend on Instagram… if it involves a dog I have to read the whole post inside my head. Otherwise I feel like my dogs are going to die. And when I say the whole post I mean read the username including any punctuation in that username separately so if it’s something like sunny underscored day I have to read the underscore bit in my head like I just said it. I also have to read out the emojis and the share, comment and like icons and if I mess up… I have to blink 4 times and start over. And this is like the most… harmless one… the most benign really. And yet it frustrates me more than anything else because I feel frozen until I get it right. And this doesn’t bode well when you’re in the middle of a conversation or you’re trying to write a paper or you’re trying to write a really important email… and you’re just stuck reading a dog post over and over again. And I’m laughing because it’s it’s maddening it is. But just the idea that I have to avoid posts that involve dogs. Oh my goodness.
Alix (811pm): It is 8:11p.m. [bark] I’m out walking my dogs. [bark] As you can hear. [barking continues throughout] This is why this ritual is so stressful because I have a chihuahua who likes to bark at everything. Which means I’m miscount every step that I take. It’s another– I need to take– I need to count… up to four 16 times. And it’s nearly impossible when this dog barks at his own shadow. It also just reminds me that the night is starting and the night is where. I experience most of my ritualizations. Really late into the evening so… not feeling great at the moment.
Alix (826pm): [knocking] It is 8:26P.M. and that was the first of many knocking rituals I have at night I have to do this again at 9:26 then again at 10:26 and if I’m still awake again at 11:26. I’m surprised I didn’t mess that one up. But… this Is just opening the gate of how exhaustive night time gets for me I don’t know why. Alix (1103pm): It is 11:03p.m. I’m in my bedroom. I just finished pacing the carpet I mentioned earlier for much the same reasons. I’m getting ready now to complete my nighttime ritual. And that would be difficult near impossible to record… as I’m brushing my teeth and rinsing my mouth for the majority of it. I have an electric toothbrush that times itself so I brush my teeth for 60 seconds… then swish mouthwash around in my mouth 100 times… and then continue rinsing for an added 60 seconds. And it takes way too much time. And seven out of seven nights a week I really just want to brush my teeth for a minute, rinse for 20 seconds, and be done with it. And yet I haven’t figured out a way to talk myself out of it. And this is when I find that my mood dips quite a lot. During the day at least I have… some distractions. I’m semi distracted during the day. But at night it’s just me and my old brain. And we don’t see eye to eye on a lot of these things. Especially right now. It’s frustrating and it’s lonely and I feel lonely.
CONCLUSION
Some people still see OCD as a moral failure. A weakness. It’s weird and if you just PUT YOUR MIND TO IT you could stop! Just like, STOP! Stop pushing your fingertips down or touchin the door!
Other people talk about “their OCD” as being something that makes them a little more fussy. Or that makes them want to have things lined up cute and proper on a shelf. They see one aspect of the compulsions, but don’t see the obsessions. Or the disorder.
But OCD is something truly difficult. The World Health Organizations ranked OCD in the top ten of the most debilitating and disabling illnesses of any kind. Maintaining friendships… jobs… relationships… all of that takes such a different kind of work. And then the thousand other “little things” that you and I don’t even think about. And of course there’s the horrible, graphic ideas forcing their way into your brain.
I think what it takes to live with OCD is courage. To get up every day and find ways to make your life happen. To be a full person. With loves and hopes and dreams. And a sense of humor. Because OCD is only ever one part of someone. It’s a dramatic part… sure… but at the end of the day… we are all so much more.
Teresa 828pm: Hello it’s Teresa Berenstein. I think it’s been a decent day. I got another text from my daughter. They’re still driving. They’ll be driving all night. I’m going to try to just keep pushing the clouds and… not think about that and just like have a little faith. That is really hard. Really really hard. But I’m working on it. This has been OK. And I really appreciate you doing it. I mean… I really had to like look internally at some of my own behaviors and reactions to things. And it’s also made me think about… other people who have maybe more extreme behaviors and what they must go through. And the difficulties that they must face every day. I mean… my heart… my heart goes out to them. how difficult. How hard. Really something. So thank you thank you thank you and God bless.
Alix (1142pm): It is. 11:42pm I’m in my room in bed in the dark exhausted. I’m a very buttoned up person. It takes a lot for me to be radically vulnerable to anyone. So this was a challenge and I’m proud of myself for taking what is usually so intensely private and protected in my heart and… verbalizing it for once. So even with all the anxiety spikes and compulsions and rituals and intrusive thinking… I can’t really… call this a bad day. And I’m not sure what tomorrow will bring. I’m not sure what mood it will be, or how I will feel in it but… I feel braver tonight than I did this morning. So, goodnight. Thanks for sticking around even if some of the things I did didn’t make sense. See you around.
[MUSIC]