- 2 months ago
The video subject is seen next to an image of a man carefully sweeping small items into a duster. The caption below reads "fear learning."
Category
🤖
TechTranscript
00:00My name is Maya Kinipitruka.
00:02I was diagnosed with obsessive-compulsive disorder when I was four years old,
00:06and it's why I pursued a degree in cognitive neuroscience.
00:09This is everything I'm authorized to tell you.
00:13Everyone, to some extent, I believe, gets intrusive thoughts,
00:16but with OCD, they stick with us like burrs.
00:20We can't stop thinking about them.
00:22It's this very debilitating disorder.
00:26It's not a love of cleaning, even if maybe you'll see me washing the same spot on the floor over and over again.
00:34It's not this brings me joy to keep washing out this spot.
00:38It's if I don't do this, something bad might happen to me or my family.
00:44I have contamination OCD because the majority of my compulsions have to do with washing.
00:56I need to wash off bad thoughts or concepts of death, or if I've driven by a graveyard, I might need to take a shower afterwards.
01:08I remember when I was growing up and I was first diagnosed, not a lot of people knew about it or those that were weren't talking about it.
01:16I was just learning about germs, these invisible monsters.
01:20Sounds really scary to a kid.
01:22I started just by asking my parents, oh, can we make sure we're washing our hands before dinner?
01:26You know, and they thought, oh, yes, what a lovely idea.
01:29It got to the point where it's causing me distress if we didn't all wash our hands before dinner.
01:34I was, you know, refusing to go outside. I was staying inside a lot more.
01:38I was terrified of dust bunnies in particular.
01:41When I was about seven, I lost my dad's mom, who I had, you know, developed a close relationship with.
01:48It was the first time I understood that something had caused her to die and that something was breast cancer.
01:55I heard the word cancer, didn't really know what that meant, asked a lot of questions.
02:01Is this something that can kill me? Can I catch it by being in the hospital where she was?
02:07My dad took us into the room to say our final goodbyes.
02:11And, you know, it was the first time I'd seen a dead body that hadn't been cleaned up for a funeral.
02:20It was, you know, her just lifeless. And whenever we went to visit my grandfather in that house afterwards,
02:27I would have to hold my breath as I walked through that room because I was afraid that I was going to catch cancer.
02:34You know, oh, if it's germs, it could be something I'm inhaling or getting on me.
02:39And that fear, catching cancer, sort of generalized into this fear of catching death.
02:48So it became that I was afraid of just about anything that could symbolize death.
02:53Because logically, I was understanding what my parents were telling me, like that cancer is not something that you get through germs.
03:00But if someone can just die and I have, you know, no control over it, if there's no way to, you know, prepare, how do I get a sense of control?
03:12I do the things that I was taught about, you know, contamination.
03:18I wash my hands. I hold my breath. I, you know, avoid places that have anything to do with death or remind me of it.
03:27It all comes down to this obsession. What are the intrusive thoughts?
03:32What are the what ifs to the compulsion?
03:35What's the behavior I'm doing to try and get just a break from this loop, this thought spiral that I'm trapped in?
03:48I often describe it as, you know, we all have alarm systems when we're faced with fear.
03:56Often we respond with fight, flight or freeze.
04:01And those alarm systems in OCD just never go off.
04:07I have daily rituals, but they're not at a set time.
04:10I just know that not a day goes by when I'm not washing my hands or sanitizing or I think some of the rituals involve things that I'm already doing, like leaving the house.
04:28I usually once in a while I can leave the house without going back.
04:34But I often have to walk back into my room to make sure the lights are off.
04:38If I'm not leaving the house, it's a little bit easier and the daily routine becomes more about contamination.
04:45I have a lucky number, I think a lot of people do, but my lucky number is more I have to do certain things like brush my teeth or flip the light switches four times, one for each member of my family.
04:58Because if I do it fewer than four times, maybe someone in my family will die.
05:02There are four members of my family, we need to keep it that way.
05:05So four is like my counting number.
05:09Those alarm bells are always going off.
05:11And what I can do is reduce the volume sometimes, you know, through the tools and practices and therapies and treatments that I've, you know, been experimenting with my whole life.
05:25It blurs this line between fact and fiction and just takes concepts literally.
05:33So I think that places and words can also be contaminated in addition to, you know, gross subway poles.
05:47What does a word become contaminated?
05:48What does that look like for you?
05:50So, for instance, words associated with death, like even the word death saying it right now, there's a little alarm bell going off.
06:00If I read the word in a book, I usually can't finish the book.
06:05Or if I do, I have to wash my hands after every time I read a new chapter, if I know that word is in that book.
06:12I often refer to my compulsions as rituals because a lot of the time they have become second nature to me.
06:21They become as, you know, automatic as brushing your teeth in the morning, as, you know, putting on clothes.
06:28Before I would go to bed each night when I was a kid, I had a dream catcher.
06:33I would not be able to go to sleep unless I had recited this kind of monologue to my dream catcher about, you know, tonight I will not have any bad dreams, only good ones.
06:43And I'd have to repeat that over and over again until I was able to just put it down.
06:50I think I had to do it, like, it varied every night, but anywhere from five to ten times.
06:58And then I could go to bed.
07:00My brain just sort of created or enhanced this idea, you have a fear of death.
07:06How can we try and control that by creating these new basically methods of compulsions of, you know, okay, here's something kind of tangible, right?
07:19Like a word.
07:21It's not explicitly tangible, but it's if you vocalize it or if it's written on a page, then it's something that is being transmitted like a cough transmits germs.
07:34Or like a dirty surface transmits bacteria.
07:39So somehow I conflated my original germophobia from years and years ago to a phobia of just, you know, concepts.
07:53I have an indoor cell phone case and an outdoor cell phone case.
07:59And they live in completely different parts of the house because wherever the outdoor cell phone case stays is contaminated to, you know, whatever has come from outside.
08:12And part of, you know, one of the first things I do when I get home, I wipe down the case.
08:21I put the case in its very particular spot.
08:24I go get the other case from its very particular spot.
08:28I wipe down my phone one more time and then it's like a very careful procedure that I do.
08:34And I have like several phone cases now that I have been through.
08:39I try to get the cheapest ones because I know I go through them so quickly.
08:43Nobody loves to do their compulsions though.
08:45And OCD takes up so much time.
08:50That's time that I could be spending doing things I really love, playing music, writing, spending time with family and friends.
08:59But instead, I, you know, it adds up.
09:05That time really adds up.
09:14I would wash my hands raw.
09:16I remember sixth grade, I had chapped and bleeding hands and I would be so embarrassed by them.
09:22I wore gloves to school.
09:24We had just moved to a new town.
09:27I was highly anxious in general and the OCD was just ramped up to a 10.
09:34I remember kids, you know, asking me about it.
09:39Why are you wearing gloves?
09:41And I would make up an excuse.
09:43I'm cold.
09:45But with my teacher, when she asked me about it,
09:51I showed her and she let me keep the gloves on.
09:54I think there was concern.
09:59One of my middle school teachers eventually asked me about it.
10:05And I remember him asking me one day after school if I wouldn't mind helping, you know, organize this box of pens or something.
10:19He was like, because I know you have OCD.
10:21So I figured this might be something that you'd really enjoy doing, is organizing this very messy box of writing utensils.
10:29I don't think this was bad.
10:30This was more just like a general misunderstanding or misconception of what OCD is.
10:35I tended to make friends pretty easily, but I wasn't great at keeping them for long periods of time.
10:43When I was younger, I was always a little bit of an odd one out.
10:49I think because of my intense anxiety, there were often a lot of games that I couldn't complete or that I would get easily upset with.
11:01I was a total tattletale.
11:06And it wasn't until being an adult looking back that I realized this was a huge part of my OCD, this need to confess things.
11:16Whenever I felt like something may have been morally wrong or even if it was just kids being kids playing on the, you know, in the neighbor's yard that maybe we weren't supposed to.
11:29I felt like if ever I were to conceal that information or lie to my parents about it, then something bad would happen to me.
11:40I used to reject this notion, this stereotype that people with OCD are perfectionists.
11:46Because I've never considered myself a perfectionist, or at least I didn't growing up.
11:52I didn't think that, oh, I need, you know, to make this frame hang at exactly a 90 degree angle.
12:00I don't need my clothes to be wrinkled.
12:03I often didn't, you know, iron my clothes or take the time to, you know, make things look nice or perfect.
12:11But I realized that the things I was obsessed with, morality, karma, being a good person, keeping, you know, my family exactly the way that it was, was a form of perfectionism.
12:30I was obsessed with having a perfect life.
12:33I don't have any resentments towards classmates or especially younger people who were making sense of behaviors that might not seem normal to them.
12:44Especially since it was not something I was very vocal about.
12:48I didn't say I have this disorder and that's why I might be acting this way.
12:56I am very close with my family.
13:03I moved back from New York to be closer to them.
13:08They live in Massachusetts and that's where I live now too.
13:11I got my mom, dad and a little sister.
13:14My parents were very aware of my OCD.
13:17But there were these kind of sneaky ways like creating bedtime rituals where it was a compulsion but to them it was also just sort of a nice way of saying goodnight.
13:31Like this is something that she likes doing before bed.
13:34As opposed to in my mind it was something that had to happen or I wouldn't be able to fall asleep or I might die in my sleep or something terrible would happen.
13:43They identified that there was something wrong with me at such a young age and fussed and obsessed over me and fought over me.
13:53My parents' relationship has always been strained and I used to think a lot of it was my fault because of my OCD because that was the thing that I heard them argue about the most.
14:08It took me a long time to realize that it wasn't my fault.
14:13There was a lot of guilt involved.
14:16I think I felt the need because my parents knew my OCD better than anyone because they were always asking me about it.
14:25They were hyper aware of it.
14:27It's hard to see your kid in pain or anyone you love in pain.
14:33And often they would argue about the right way to handle it.
14:38So they had different ideas about the best way to comfort me or the best way to approach OCD in general.
14:48One of my big compulsions that I haven't talked about is reassurance seeking.
14:52It's asking, can this happen?
14:55Is this real?
14:56Am I a bad person?
14:57Am I, I need someone to tell me that washing my hands isn't, or that not washing my hands won't kill me.
15:07Or I need someone to tell me that cancer can't be transmitted by breathing in the same room.
15:12I would ask those questions constantly and I would get that from them.
15:15I learned that pretty quickly because I would go to them, each individual, mom and dad, with very different requests.
15:24My dad I could always count on to like give me reassurance.
15:27Mom and I aren't going to turn into pigs like in Spirited Away, which was a huge fear of mine as a kid.
15:32I was really afraid that they were going to turn into pigs and get eaten like that Hayao Miyazaki movie.
15:37It was a little tougher with my mom.
15:40I think a lot of the times she felt like it was a failure on her part when I was in distress.
15:47There were a few times when my parents would get, you know, just frustrated and upset.
15:54Of course, like your child's in pain, you want to just snap your fingers and make it go away.
16:00If I was in the corner or, you know, afraid for them to touch me because I thought their hands were contaminated,
16:08sometimes they would just touch me anyway as sort of like an exposure.
16:14But also I think they were just doing it out of anger.
16:17And that was not the way to do it.
16:21You can't force exposure onto someone.
16:25When I was seven years old, my mom actually took me to see a shaman, a friend of hers, which is totally wild.
16:36How many seven year olds can say that they've seen a shaman?
16:39She was this lovely woman.
16:41She had a lot of crystals in her room and she had me lie down on a table and took me through this guided meditation where she asked me to visualize my OCD the way that so many of my therapists had.
16:58But instead of, you know, picturing it as a monster or as this being that I needed to get rid of, she said, we're going to take your OCD on a safari.
17:06And I think your OCD might be a little bit scared.
17:09So maybe you need to hold its hand and we're going to show it all the things that it's afraid of.
17:15And you're just going to be there with it.
17:18And maybe you can show it that it's not actually as scary as it looks.
17:25And that was the first time that I'd really been invited to have empathy for this part of me that really I just kind of defined as crazy and wrong.
17:36And that kind of shifted my whole relationship with OCD.
17:42I do consider it part of my identity.
17:45I don't think it defines who I am, but I do think a lot of who I am today is because of my OCD.
17:52I've been in therapy on and off since I was maybe eight years old.
17:59I started pretty young.
18:02It's recognized in the DSM-5 as obsessive compulsive and related disorders.
18:07And that's a relatively new thing.
18:10Before in the DSM-4, OCD was listed under anxiety disorder.
18:16And I think it's really actually important that this diagnostic criteria has started to examine OCD as a separate disorder.
18:25Differentiating it from an anxiety disorder.
18:28While anxiety is a very large part of the experience of OCD, it's categorized by the behaviors in response to the anxiety.
18:39Generalized anxiety might be more about the emotional state that we're in, whereas OCD is taking it to that next level.
18:48What are the behaviors that come with it?
18:50I was lucky I had a pediatrician who had seen other cases of OCD in children.
18:58And at the time it was believed that it could be caused by something called PANDAS, which is pediatric autoimmune neurological disorders caused by streptococcal infection, which is like a big fancy way of saying these OCD symptoms and a neurological disorder that developed by a virus, strep in particular.
19:25Pandas, I guess, was sort of a possible cause of OCD.
19:31If it is PANDAS, then it'll go away with a round of antibiotics, was the idea.
19:37And for me it actually did for a few years.
19:40I took a round of antibiotics when I was four.
19:42I stopped the constant washing my hands until they were raw.
19:47And then a few years later it came back.
19:56I have tried a number of different therapies for my OCD.
20:00The gold standard is exposure response prevention therapy.
20:04You are exposed to something you might be afraid of and you are gradually building up the ability to face it without the urge to do the compulsion.
20:17So response prevention is sort of the second half of that.
20:21How do we get you to the point where you're reducing and limiting the number of times that you're doing the compulsion or even just the amount of time that it's taking to do the compulsions in a gradual and, you know, safe way.
20:37The first time that I had experience with this was with my therapist in middle school.
20:44And one of the things that he did was recorded, it was like a mixtape for me, but it was the words that I was afraid of.
20:52It was like funeral, graveyard, death.
20:55My assignment was to play that mixtape on repeat and listen to it.
20:59And then I redeveloped a fear of walking through graveyards again.
21:04I've had therapists say to me, just, just don't do the compulsions as if that's, you know, easy.
21:11I recently started acceptance and commitment therapy, which is about building a neutral relationship with my OCD and accepting that I am always going to have it.
21:29And that has been one of the most effective therapies that I've had.
21:36And I've, I've tried a lot of them in my day.
21:39One of the first things my therapist said on day one was, okay, you're always going to have OCD.
21:46No one had ever just said that to me before.
21:49I'd always started therapy, you know, with this expectation, these goals that I was going to get better or, you know, even if I couldn't cure myself, there would be healing involved or there would be, you know, a point that I could get to eventually where I wasn't as OCD or I wasn't doing the compulsions.
22:09And it was the realist that any therapist had ever gotten with me.
22:15And it almost felt like a relief, like, okay, I'm, I'm being forgiven almost for being the way that I am.
22:26And now how can I find the tools and support to make sure that I am not letting it control my life, that I'm still able to live the life that I want to.
22:40I used to say all the time, I suffer from OCD.
22:45But more recently, I have been trying to establish a more neutral relationship with my OCD.
22:55Um, by saying I have OCD, I'm accepting that I have OCD, that it is a part of me.
23:06It still took me years and years to be comfortable telling my friends that I have OCD.
23:16And actually, it really wasn't until college that I even, you know, met some of my first friends that also had OCD.
23:24So in high school and college, I was a big theater kid.
23:29And I met my very dear friend, Susanna, when we were working on a play for her senior show in college.
23:36And I remember after one of the rehearsals, we went back to her dorm to hang out.
23:43And I was sitting on her floor and looked over her bookshelf and saw the OCD workbook, which was something that my mom had given me when I was in high school.
23:53I said, I have this book, too.
23:55And immediately it was that unspoken, oh, you also have OCD?
24:01You you're one of us.
24:03She didn't think at first that she had OCD because she had something that's referred to as pure O OCD, where it's purely obsessions.
24:13And I personally feel a little weird about that terminology because when they say pure O, what they mean is that the compulsions are all mental.
24:25They're hidden.
24:26So the things that she was doing were reciting prayers in her head and, you know, checking things and replaying memories.
24:38And she didn't know that she had it originally.
24:42Neither of us had realized that it was something that we could, you know, talk about openly.
24:48So we shared a lot about like the commonalities, about how we were both total hypochondriacs and constantly terrified that every little ache or pain was a brain tumor or, you know, heart attack.
25:01And how we just, you know, people were always telling us to just trust our bodies and listen to our bodies and how that felt impossible most of the time.
25:11We ended up writing a play together called So OCD.
25:15It's sort of an ironic twist on the fact that OCD is often colloquially used as an adjective, which is not. It is not a cute, quirky trait.
25:26So we took a little bit more of a half biopic, half kind of absurdist take.
25:33We donned lab coats and acted like we were these fear experts and we're going to convince you today about why being afraid of everything is actually amazing.
25:43And that was sort of interspliced with memoirs from our life.
25:48We ran it in Philadelphia. We ran it in New York. And most recently we took it to the Edinburgh Fringe Festival.
25:55I began sharing about my experience living with OCD on social media.
26:00I remember the first TikTok that I made that went viral.
26:06It was showing me, you know, cleaning things and organizing.
26:10And the caption was, what people think OCD looks like.
26:13And then I showed versus, you know, what OCD actually looks like.
26:20And it was me flipping a light switch a bunch of times.
26:23It resonated with a lot of people.
26:24And even looking back on that video now, there are things I would have said differently.
26:28Like instead of saying, this is what people think OCD looks like versus what it actually looks like.
26:34Feels a little like gatekeepy language as if I'm saying that this is the experience of everyone when it is very much not.
26:42It only reflects mine.
26:43You know, people on the Internet love to argue.
26:46So it's kind of a joke that I went back to school out of spite.
26:52But it's also not really because I wanted to have as much expertise and knowledge about the subject that I wanted to talk about as possible.
27:03So I could, you know, do my own research.
27:06I could pull what I knew, what I had learned.
27:09I could whip out my textbooks from college.
27:11But I wanted to like, I wanted to take a step further.
27:13I was like, I really enjoy having these conversations, even if, you know, sometimes on the Internet people think,
27:19oh, this can't be true or, oh, they want to argue with, you know, things that you're presenting as facts, which totally understandable.
27:27We all should question everything.
27:30But I wanted to be able to have the right comebacks, be able to have the right moments of, you know, educating people about the science of OCD.
27:40Not just the science of OCD, but, you know, the science of uncertainty and fear learning, which is what I went on to do in my cognitive science program.
27:52I got my master's degree in cognitive neuroscience and I had studied theater and cognitive neuroscience in undergrad.
28:01I was very much into the idea of learning how the brain worked into getting that certainty.
28:12A lot of the people that came to me were just people who were learning about themselves and their own anxiety and OCD.
28:20Some of them were parents or loved ones of someone who had OCD.
28:24I was finding that there were these people who were coming to my videos about OCD and basically, yeah, saying, like, thank you for explaining this or I never knew other people thought this way.
28:41The things that I wish I had been able to see or hear or learn about when I was growing up and at the very least feeling less alone is something.
28:57But I had about 130,000 on TikTok. I started posting on Instagram as well, got up to 16,000 and then realized I didn't want to be posting my OCD videos there as much because my friends, family, co-workers were starting to see them and interact with them.
29:17Which was an interesting experience and made it a little bit harder for me to want to be as public.
29:27It's a variant community and I was afraid of being branded as the OCD girl or so I wanted to branch out.
29:36And I realized a lot of my mental health was beginning to suffer as a result of being kind of addicted to TikTok to feeling like I'm, you know, sharing these very personal things.
29:49And if it doesn't get a certain number of likes, it must be a bad video.
29:54And I've cut back on feeling like I need to constantly be present and active.
30:00But I still get questions to this day and people who reach out to me to just ask for advice.
30:07And I am always having to say I'm not a medical professional.
30:12I can offer my own experience and hope that that is helpful.
30:24When I would hear people say I'm so OCD, I learned from a pretty young age that they didn't mean, you know, I'm so, you know, terrified something bad is going to happen to my family if I don't slam the car door four times.
30:39I knew that they were saying, you know, oh, let me just fix your collar for you.
30:45I'm so OCD.
30:46OCD being used as an adjective has come to mean I love cleanliness.
30:52And it used to not bother me at all, actually.
30:56As I got older, I noticed that it actually became kind of like a hindrance to me explaining what my OCD was.
31:08I was afraid of correcting people when they would say I'm so OCD.
31:15I was afraid of saying like, but do you actually?
31:18So I think there is an understanding that this mental disorder is not always being used appropriately in our language.
31:28I grew up in the era of Monk, which was my first exposure to any kind of OCD portrayal in the media.
31:37And his compulsions were conveyed very physically.
31:45So it was a lot of like order, neatness, cleanliness.
31:48There's this, you know, great opening shot of him, you know, flossing ten times and, you know, opening his drawers and having everything very neatly organized.
32:00And it was hard to see myself in that.
32:05And I think originally I was resistant and felt like portrayals like that, portrayals like Emma Pillsbury on Glee, who also had OCD and would clean her grapes with a wipe, felt detrimental almost.
32:22Like they were perpetuating the stereotype that OCD is all about cleaning and neatness.
32:29I think sometimes people also bring up Monica from Friends, who genuinely does seem to love cleaning or like Danny Tanner from Full House.
32:38And that really makes all the difference, right?
32:41Like this persistence, this, God, I need to do this or something terrible is going to happen.
32:47Not, I love having everything in order and, you know, looking nice and neat.
32:53When I would tell people that I had OCD early on, they would notice things about me that didn't quite fit their ideas of OCD.
33:02They'd say, oh, well, why is your collar popped or why is your room a total mess?
33:08You know, and I'd have to be like, well, I'm too busy trying to, you know, blink away the thought of a car compactor, of getting stuck in a car compactor.
33:20Like, or, you know, I can't go near dirt.
33:25So actually my room is going to be pretty messy.
33:28And the things that like, just in those little ways trying to counter the stereotypes that I think were definitely assisted by those early media portrayals.
33:38When I first read Turtles All the Way Down, this novel by John Green, I felt really seen.
33:43John Green has also been very vocal about his experience with OCD in his adulthood.
33:49And so he wrote this character who's a high schooler that lives with OCD.
33:53She starts drinking the hand sanitizer and it was, she has contamination OCD.
33:58And maybe so did, you know, Monk and Emma Pillsbury on Glee.
34:03But for them it was like kind of a cutesy, quirky thing that, you know, made them like cooler, like just more interesting.
34:15And then here it was something that it just really showed how deep and intense and how like, you know, terrifying it can really be.
34:25If you have a loved one with OCD, I know it's probably very scary not to know what's going on in their head.
34:37There's a lot of the times that I use my loved ones to enable my compulsions by seeking reassurance.
34:47I think that being able to advocate for yourself to set limitations of, okay, I gave you reassurance once today.
34:56If you ask again, I'm not going to give it.
34:59And to work out different routines with that loved one is going to be a very important thing.
35:08Communication is huge.
35:12OCD is not the easiest thing to describe.
35:15It's in fact very difficult and ever changing.
35:18And sometimes a loved one might need to just come and say a bunch of things that sound, you know, completely wild and not like themselves.
35:31And creating space for that is really powerful.
35:38Dating is hard.
35:45Intimacy in general has always been pretty difficult for me.
35:49I am better at keeping friends now but I'm not as good at staying in relationships.
35:56And I think, you know, this really strong fear of commitment kind of washes over of what if they're not the one?
36:09What if I'm leading them on?
36:11What if I don't actually feel anything for them?
36:14Or, you know, all these social what ifs on top of it is I need to really trust someone to, you know, be able to like be touched and to have any kind of like physical relationship too.
36:34And it's so it takes time but then it's also like a lot of work on my part.
36:41And they just often, you know, have ended because I am uncomfortable because I don't want the uncertainty of not ever like being able to read another person's mind, know what they really think of me.
37:05And in spite of like how comfortable I get talking with my OCD, there's so much of it that I do behind closed doors that it's insanely difficult to be vulnerable.
37:22It's hard to be vulnerable in general but letting someone into your daily routine when that daily routine is, you know, compulsions and things that may not make sense to them, it's scary.
37:38I've used dating apps before. I'm not a huge fan. I like to varying levels of success, gone on dates with them. And that's, I kind of have this like, all or nothing attitude to where I'm like, okay, I need to prove to myself that people like me that people still want to date me.
37:55I'll go on a date with someone that I don't even really like that much just to, you know, show that I am likable.
38:03And in a way that's sort of like a checking. That's like a testing of this, you know, value. What if no one likes you?
38:11So, yeah, I mean, the first thing that I tell people, I don't, it's usually not, I have OCD. But often it's, you know, I like talking about fear because I think it is universal.
38:32And it's something that people can relate to. And then if it naturally evolves into being able to disclose a little bit more about the way that my brain likes to handle fear, then that's good.
38:49But my concern is always making the other person comfortable. And I think there's this belief that I can never shake that I, I, because I am uncomfortable so much of the time, that's going to make the other person uncomfortable, that I'm contaminated in a way.
39:11I, I, I've been shown a lot of kindness, and I don't always feel like I deserve it. And I also feel like the more that I, the more that I show of myself, the more I want to pull away from the other person.
39:29OCD is categorized first and foremost by the presence of intrusive or unwanted thoughts. And often these thoughts or urges or images that come into our brains are distressing and causing anxiety.
39:51So, with OCD, we might do a compulsion or a behavior to try and get rid of or alleviate that anxiety.
39:59As of 2024, the NIH suggested that somewhere between 1% and 3% of the global population is impacted by OCD.
40:08There is constantly emergent research on OCD. A lot of the diagnostic surveys that we have are not cross-international.
40:17So, they're not always representative in non-Western countries.
40:22In the United States, the statistic that gets thrown around most of the time is that 1 in 40 adults will be affected by OCD at some point in their life with a 2.3% prevalence.
40:34And for teens and children, that is 1 in 100, which I found really interesting because to me, because my OCD was so strong and emergent when I was a child, I think I just had this assumption that, oh, when I get older, things will get better.
40:57While we're continuing to refine these diagnostic tools and while there is a global effort to spread awareness about what OCD is, these numbers might be changing just because we are getting better at identifying OCD symptoms.
41:15People are able to come forward and get the help and treatment that they need, but that doesn't necessarily mean that OCD was not always there, that these numbers weren't always accurate.
41:32They're just what's reflected in our surveys and our data.
41:35I work in social media and I do a lot of digital content creation for a museum in Massachusetts.
41:47I, when I shake hands with people, I will do it, but I'll have the urge to wash my hands or sanitize after, but I've had to learn to wait until people walk away to sanitize so that they don't get offended.
42:05One of the questions that sort of comes up about what are the goals for how I want to be living my life.
42:15And I think when I used to hear the question, where do you see yourself in five years?
42:21I would have really lofty goals.
42:25I would, in an ideal world, used to say maybe I wouldn't have OCD anymore.
42:33But I think I always would say that just because I thought it's what other people would want to hear, when in reality, you know, OCD is so much a part of me.
42:43I can't imagine extricating myself from it.
42:47But, or I would imagine, you know, having a job that pays me so much that I, you know, can keep myself comfortable and buy all the phone cases that I need.
43:00Or I would imagine, you know, being in a relationship where I feel totally myself and comfortable.
43:09But I think in a more realistic way, when I think about the future, I think about the way that I'm spending my time.
43:22I, and I do see myself now, I think clearer than ever, being able to make time to make music and art and spend time with loved ones and friends and seeing the world and finding those opportunities where OCD doesn't get to dictate my life.
43:47And I don't want to keep thinking about things in terms of good and bad, better and worse, just acceptance without judgment.
43:58And how can that support the things that I really want to be doing, which are the things that make me happy?
44:06And that's not cleaning and washing my hands 12 times in an hour.
44:12I've started to write a play just of my own.
44:16That's kind of something I've been working on and off for years.
44:21And it's about basically how to survive the end of the world on a daily basis.
44:33And that idea that I'm constantly living through the end of the world in my head, even if it's not actually happening, it feels like it is.
44:44And how can I be sure, and how can I be sure, and kind of taking a comedic lens to that as well.
44:52Find ways, find the things about you that OCD hasn't taken.
45:07And I guess it's like hard for me, I think it's hard for me to say all of this just because I'm working on thinking about OCD as being this part of me that needs love and care just as much as every other part of me.
45:26I think the things that I wish I had known, at least when I was very young, were that you're not special, that other people do think like this, that you are also special because nobody thinks exactly like you.
45:50And if you're trying treatment that isn't working for you, don't give up on it, or don't give up on trying to find something that works for you.
46:07To anyone who feels like OCD is taking over your life, remember first and foremost that you are not your thoughts.
46:14Community, a deeper understanding of your mind, and help are all out there for you.
Comments