In honor of OCD Awareness Week, this episode features two deeply personal stories about living with obsessive compulsive disorder.

Part 1: For Hannah Hedelius, a classmate’s hiccups trigger an overwhelming reaction she can’t hold back.

Hannah Hedelius was born and raised in Idaho. She received her Bachelors of Psychology from Boise State University and is currently working on her Masters in Biomolecular Sciences. Hannah plans to attend medical school where she will work towards a dual doctorate for a career as a medical scientist. Hannah is a graduate assistant for the Dean of Students Office where she works in substance misuse prevention. She focuses on creating alcohol and other drugs education and awareness. Hannah is also doing research at Boise State where she studies cholera toxin and its potential in treatment of inflammatory bowel diseases. In her free time, Hannah enjoys reading and spending time with her family.

Part 2: As a graduate student, Rachel Hostetler begins to realize that her intrusive thoughts may be more than just regular stress.

Rachel Hostetler is a scientist at the Allen Institute for Brain Science and her role focuses on providing scientific training to users of the institute’s tools and datasets. Prior to working at the institute, she completed a Ph.D. in Neuroscience at West Virginia University, where she used many Allen Institute datasets to guide her research on somatostatin inhibitory interneuron diversity. She completed her B.S. at the University of Minnesota, double-majoring in Neuroscience and German Studies. Now living in Seattle, she yells out in excitement whenever she sees a mountain (not just Mt. Rainier but literally any mountain) after growing up in the Midwest. When not yelling at mountains, she spends her free time trying new seafood restaurants with her partner, snuggling with their very needy cat, and exploring the beauty of the PNW.

Episode Transcript

Part 1

For the first semester of grad school, I wanted to be ready. I sat in the front row, I had my laptop open with my textbook pulled up, my iPad was ready for notes, my phone had iClicker on, I mean, Apple could have sponsored me. I was very ready.

The professor starts to dive in into cell biology and macromolecules and then, all of a sudden, there's a hiccup. It's literally right behind me, as if someone leaned forward and put their mouth right next to my ear and hiccupped.

I immediately felt my body tense and my eye began to twitch, and then it was quiet and I was okay. And then hiccup, again and again.

Hannah Hedelius shares her story at The Lookout Room at Boise State University in September 2024. Photo by Joe Rodman.

I remember sitting there thinking, “What an asshole,” which I know sounds like a really strong response to the poor kid sitting behind me trying to learn and got the hiccups but, to me, for me it felt like I was on fire. Like there were flames on top of flames and I couldn't put them out. I was doing everything I could do to focus. I was clenching my fists, failing to do anything but leave sores on my palms. It was just hiccup and hiccup and hiccup. All I wanted to do was run and scream and fight and cry. Instead, it felt like hours just sitting there doing everything I could do to resist every urge to shut out the noise.

It felt like hours just sitting there, and everything was a blur. But as soon as I saw other students start to pack up, I immediately left. I went straight to my work office, I shut my door and I just cried. I cried and cried over a silly little hiccup.

As soon as I was able to start catching my breath, I called my doctor because, clearly, there was something wrong with me. It felt like a tiny little virus that was seemingly invisible yet it just was creating havoc and mayhem and madness all along its path.

I've been known to give people a couple dirty looks if maybe they chew too loud or blow their nose at the table or sniffle or breathe or make unnecessary noise. I give them a look, yeah. But usually, I can remove myself from those situations. I can say something or put my headphones in or simply just leave. But how was I supposed to tell this random student behind me to shut the hell up without being mean?

And I couldn't leave because I was really trying to pay attention to the lecture. But I couldn't even remember anything that took place after the hiccups started. I remember sitting there just feeling completely out of control.

As I'm sitting in the doctor's office, I'm retelling the story. Once again, I'm just overcome with these crazy emotions over a hiccup. The doctor, she's looking at me and she hands me the box of tissues and I'm trying to wipe away my tears.

She goes, “Hannah, are these noises real? Like, can everyone else hear these sounds too?”

I'm looking at her just desperate for someone to understand what I'm going through, and I'm begging her to understand me when I say, “Look, I'm not crazy. I swear, the student behind me makes noises. I need you to tell me what's going on.”

But I left the doctor's office just feeling completely hopeless. She said she's going to talk to her colleagues and would maybe give me a call.

The next day, I hear from her nurse. Her nurse tells me that I have something called misophonia. It's a disorder where individuals react strongly to certain noises. They suggested I talk to the psychiatrist to learn a little bit more about this disorder.

Well, I do what anyone does and I Google. I call my sister and I tell her that these doctors are being crazy. My hormones are out of whack and they just won't order the lab work. And we spend a lot of time on FaceTime laughing about the Google searches.

I remember one Google search making us laugh a lot because it said misophonia was common in people with OCD, and I am an incredible mess. I mean, my room is terribly messy so there was just no way I could have OCD.

But I suck it up. I go see the psychiatrist and I'm retelling my story. About five minutes in, he tries to sneakily grab a piece of paper out of his filing cabinet. He's acting real nonchalant and he's writing some notes down, but then his questions start to get oddly specific. And he asks me if there's anything I have to do, if there's any rituals or if there's anything I do before I leave the house.

I'm like, “Sure. I shut all the doors in my house and I unplug everything and I check the stove, and occasionally I'll video myself locking the door. I mean, nothing crazy. Little quirky, maybe. Maybe a little anxiety, you know. That's it. Nothing crazy.”

Then he asks if I like to have things in a certain order, and I laugh. I tell him, “Yeah, I love things my way. Who doesn't? But that's pretty obvious, right?”

And he asks if I'm constantly feeling like I need to be cleaning, and I tell him, “Absolutely not. I mean, they're a complete mess or I'm very organized. One or the other for me.”

All these weird questions go on for about 15 more minutes and he's scribbling all these stuff down. Then he finally hands me this piece of paper, just covered in his penmarks, and he says, "Hannah, you have OCD."

Apparently, there is a difference between being quirky and being obsessive and compulsive. Who would have thought? But after I was diagnosed, I got to start to kind of see these OCD behaviors appear in my everyday life. This is where I get to tell you guys about my laundry.

I love clothes. I have a fantastic closet. Absolutely beautiful. It's organized by sleeve length and shirt length and by occasion. It's fantastic, but it takes a really long time to do. And I have found that if I don't have the energy or the time to do it the way that I feel it needs to be done, then I just simply won't do it.

It is really hard for me to walk into my closet and see that all of my jeans don't fold perfectly the same way. Do you have any idea how many types of different jeans there are? It is really hard to fold a pair of bell‑bottom jeans and make it look just like a pair of skinny jeans. I mean, I've spent hours on this closet.

So it's really frustrating. But I've spent a lot of time learning to accept this. And while accepting the fact that I do have OCD, I have also been working on giving myself some grace. Look, I really like control. I might even be obsessed with control. But I have found that the more control that I'm seeking, the less control that I actually have. As I'm trying to be in control of a situation, I tend to lose control of my thoughts, of my emotions, and of myself.

When I'm in class, I'll spend hours and hours trying to take these perfect notes, and then I end up getting behind in class because I'm rewriting constantly, always looking for a certain level of perfection that I'm just unable to achieve.

And laundry, laundry of course gets avoided. And places. I stop going to places because when I'm around others, I can't control the sounds that I might possibly be exposed to. So I'm constantly fighting for control and yet constantly losing it.

I have been really working on accepting that I have OCD. And with some treatment and help and support, I have been able to leave the house without shutting the doors all the way. But, again, I'm working on giving myself grace. So sometimes when I'm tired or stressed, I just shut the damn doors because it's okay. It's okay to not have that control.

I've also found that it's okay to talk and joke about having OCD, because the more awareness that I bring, I've found a lot more support. And sometimes, I just let my laundry sit in the basket and I wait until I'm ready. That means I have to iron a lot of clothes.

Since being diagnosed with OCD, I’ve felt like I've gone back to kindergarten, relearning everything. I've relearned what OCD is, what it looks like for me, and how to live with it. I definitely have not gotten my OCD degree, but next time you see me in class, I will be ready. I will be sitting in the front row. I will have my laptop pulled up with the textbook open. I'll have my iPad ready for notes. My phone will have iClicker. And there is going to be a hiccup or cough or the inevitable sniffle during flu season, but I'm not going to flinch. I won't cry. I'll sit there. I'll make it through. And those hiccups or those coughs are going to last until the end of class, but so will I.

And as I continue learning how to let go of control, I'm really excited to start gaining control of me again.

Thank you.

Part 2

Every wet lab scientist probably knows this feeling. You come home from work after a super long day in lab, you're ready to lay down and go to sleep and have nice dreams. But the instant you shut your eyes, a thought pops in your head, “Did I shut the minus‑80 freezer all the way?”

For the non‑scientists in the audience, minus‑80 freezers are set at minus 80 degrees Celsius. They're extremely powerful. They hold decades of research in them, and when they fail, it's like a huge disaster in the lab and it's an emergency.

Rachel Hostetler shares her story at Allen Institute Auditorium in Seattle, WA in September 2024. Photo by Erik Dinnel, Allen Institute.

So sometimes you have thoughts in your head about, “Did I shut it all the way?” For some scientists, the next thought is, “Well, of course I did. It has an alarm. The alarm would have gone off if I didn't shut it all the way. It's fine. I'll go to lab tomorrow.”

But for some people, like me, sometimes these thoughts start to spiral and get more and more irrational. They go, "Well, what if the alarm's actually broken and the alarm's going off but you can't hear it? You know, you just ruined 10 years of research and the whole department hates you. You should probably just get in your car and drive to lab right now. It doesn't matter that it's midnight, you need to go to lab."

Then these thoughts, sometimes they just keep going on and on and on and on. The thing is, this was not my first time working with this freezer. I was in my fifth year of my PhD. I had worked with this freezer many times in the last five years. I knew how to shut it correctly. This was not a new thing for me. But I started getting these thoughts, and these thoughts started happening in 2020 right after the pandemic started.

I know for a lot of people, the pandemic sort of just changed everything. Our worlds went upside down, and my world definitely went upside down. We were kicked out of our research labs for a little bit of time, so I spent a lot of time watching Netflix, watching Love is Blind, watching that tiger show.

My roommate was also a fellow PhD student, so we got to bond over that together. My cat, he got to sit on numerous virtual lab meetings and committee meetings, and he saw some defenses, so he should probably get a doctorate at this point.

In general, things weren't great because there was a global pandemic and I couldn't do my research because I wasn't in lab, but they weren't terrible. I was in a rural state with pretty low infection rates, and I could still go outside and go hiking. I could see my friends and family on Zoom. Again, things weren't terrible. They weren't great, but they weren't terrible.

It really wasn't until year two of the pandemic, in 2021, when things actually got worse for me. We were starting to reintegrate into society. Me and my friends all scheduled our vaccine appointments together, because we were so excited to finally get vaccinated. We had a celebratory dinner afterwards. We went out for the first time in like a year‑and‑a‑half. And instead of enjoying the dinner, I just had all these constant thoughts about, “Well, how do you know how clean your fork is? What if you get food poisoning? Is there asbestos? What about a gas leak?” All these thoughts that just kept flooding my head. I tried to ignore them and act normal and just eat my dinner and not talk about the asbestos I was thinking about.

And these thoughts started happening more and more. They also happened a lot in my research lab. And for those who have not worked in a neuroscience research lab, sometimes there are hazardous things in there. There are lab safety protocols that you do. I was familiar with all these lab safety protocols because I had been in this lab for five years at this point.

But being in there now was different. It was like there was an improv group in my head and the theme was a thousand ways to die. And being in the lab, the options were laser beams, razor blades, carcinogens, acid, centrifuges. A lot of scientists have a healthy fear of centrifuges because they can get pretty dangerous. All these thoughts we're just going constantly.

At first, I thought, “Well, this is just normal grad student stuff.” We're all scared sometimes in the lab, because we do work with some sometimes scary things. This is normal. But then it started to affect me physically. I was in the middle of doing this experiment in lab and my Fitbit started buzzing, because it was congratulating me for doing 100 minutes of exercise because of how fast my heart rate was going. I was not exercising. I had been sitting down for the last two hours doing a procedure, which required a lot of stress and focus. But I was so nervous that my heart rate was skyrocketing the entire time that I was sitting there.

At this point, I started to think, “Maybe this isn't regular anxiety. Maybe I need to talk to someone.” I remember calling my parents after I left lab and I explained to them what was happening. And my dad asked in a serious tone, he said, "Do you think you can continue this PhD? Physically, are you okay? Is this worth it?"

And I said, "I don't know. That's a good question.” I was five years in. Sunk and cost fallacy, really didn't want to turn back at this point.

So I went and signed up for a waiting list to see a therapist. While I was on that waiting list, I did what anyone would do. I went to Reddit to see what was going on. And I actually found very useful information on Reddit. I learned that I wasn't going crazy. My situation was not unique at all. And then I was having very textbook examples, symptoms of something called OCD or obsessive compulsive disorder.

And I thought, “That's weird because OCD is about people who like cleaning and organizing stuff, right?” That's what I thought based on the media and jokes that people make. Like, “Right? I'm so OCD. Look at my nice bookshelf.” That was my understanding.

I'm a very Type B person who has never color coordinated anything in my entire life, so I was like, "I don't know about this."

But then I met with a specialist. He diagnosed me right away and said, "You have a pretty severe case." Then at that moment, I learned that there's a huge difference between organizing things because you like being organized and it makes you happy and organizing things because you're so fearful that if you don't do this thing this right way, all these thoughts in your head tell you harmful things are going to happen to you and your family. That's the distinction here.

I just want to point that out because it takes people many, many years to be diagnosed with OCD correctly because of this misinformation and misrepresentation. It only took me a year to get diagnosed. That's because I was working with people in my grad program who also had OCD. And they said, “Oh, no. Yeah, I worry I'm going to make airplanes crash with my mind. So, that's OCD.”

And I was like, “Oh, they don't talk about that in the media. That's not in the jokes.”

Magical thinking OCD, that's what that subset is called. There's also postpartum OCD, there's a bunch of different subsections.

Also, OCD has a pretty high suicide rate, so that's another reason why I just want to bring up accurate representation of what the disorder actually is.

This one I had been diagnosed, and I thought, “Okay, that's interesting.” And then my symptoms, they didn't magically go away. I was still having some issues, especially at medical appointments, because so many things can go wrong. I, being a scientist and reading research articles, I knew about lots of things that could go wrong. But I, I chipped a filling on my tooth and I had to go to the dentist. I had not been to the dentist for a few years because I was above age 26, so I had aged off my parents' dental insurance, and also because I'd gained this fear of the dentist.

So I showed up at the dentist. I tried to explain. I said, “I'm a little nervous.” He probably thought, like, “Oh, yeah, most of my patients don't like pain. They're nervous.”

I started talking to him about autoclaves because my OCD thoughts convinced me that I was going to get a lethal infection from this dentist office and I wanted to know their sterilization process. He listened to me ask all these ridiculous questions for a good 10, 20 minutes. Eventually, I settled down and we were able to start the procedure where I was getting a crown put on.

At the very end of the procedure, right when he was finishing up, he was like, "Oh, I'm just going to redo this little corner in the back over here, because I'm a little OCD."

I thought, "Oh." I didn't say anything because he was so patient with me, a very neurotic patient. I rolled my eyes internally, but I was just like, “Oh, wow, if only he knew. Only he knew.”

Then the next step was treatment. I learned that there's a very specific type of treatment for OCD. It's called exposure and response prevention therapy, or ERP for short. Okay. Someone's got it. We're good. Basically, I think most people have a vague idea of it. You're scared of snakes, you go see a bunch of snakes, it's that type of thing. But when you're scared of everything, your therapist gets to be really, really creative with how they get to expose you to stuff.

One week, I mentioned I was really scared of various harsh chemicals, and the next week my therapist showed up with a bottle of Drano in his backpack. I was terrified of Drano at this point. I would avoid walking down the aisles that had Drano in the grocery store because I was so convinced just being in the vicinity of Drano meant I would somehow swallow it or I would somehow burn my eyes out. Because when you have OCD, these thoughts are very real and you believe them. You're like, “Oh, yeah, I can't even go within 20 feet of the Drano. It will kill me. Got it.”

So he brought out this bottle of Drano, and you know how some people get like a sack of flour to pretend they have a baby, I basically had a Drano baby at this point. I was instructed to grab the Drano bottle, hold it, hug it, cradle it, walk around the building with it. It was good that these sessions were happening in the evenings when all the undergrad psychology students weren't in the building anymore, because they would probably be like, "What on earth is happening with these weird grad students and the Drano?"

So, just one example. I had to do many other interesting things for therapy. I had to write my own obituary and read it to people, all sorts of really fun exposure stuff like that. And I ended up doing these sessions for a year. I did over 40 sessions. Normally, these sessions would cost hundreds of dollars per session. But since I was at a university, I was actually getting treatment from the clinical psychology PhD candidates, and they needed people for their clinical hours. So I got a very, very discounted rate and I also got to help some other fellow PhD students finish their dissertations. I point that out because this would have been thousands of dollars if I didn't have this fortunate opportunity.

So after a year of this therapy, I was really starting to be more normal. Friends could notice, my partner could notice, my parents could notice, like, "Oh, you seem like a normal person again. That's nice."

I still had a few barriers left, and one of those barriers was airplanes. I wasn't scared of airplanes crashing. I was scared of having a seizure on the airplane. What if I go into anaphylactic shock? What if I have a stroke? Just all the medical things that I know about.

But then I had to get on an airplane. I had already missed a friend's wedding at this point. I had already missed multiple important events, but being a graduate student, sometimes you have to travel for research or for collaborations. And my PhD advisor said we were invited to do a collaboration with electron microscopy, which I was super stoked about, but the collaboration was located in Japan. And so I would need to get on an airplane, fly across the Pacific, by myself, to another country.

My gut reaction said, "No, I can't do that." And sometimes when you have OCD, you cannot trust your gut reaction because it's usually an intrusive thought that's not correct. So I had to spend a good week or two with myself debating, "Should I actually go to Japan?" And the answer was, “Of course.” It was an amazing research opportunity. There was funding available. I got to do cool science and learn a new culture.

So, spoiler, I got on the airplane. It was the longest flight of my life. It was 11 hours. The lady next to me was also very anxious, so that was fun. But it was a Japanese airline so they served really good food on the flight, so that was also good. And I paid for the $30 Wi‑Fi, so I could let my family know I was alive the entire time.

But besides that, I made it. I landed. We did our cool research project and there was a moment where I had some vacation time by myself for a day. I went up to this lake near Mount Fuji and I went on this boat tour because I wanted to explore.

And I just started crying when I was on this boat tour, not because I was anxious, but because I was finally relaxed and I could finally enjoy and think, "Oh, this is nice. It's nice to be on a boat in a foreign country and enjoy the mountains and not be so scared all the time."

I called my parents at that point, let them know how I was feeling. My mom was very proud of me. And my dad said, "You're not the same daughter I had two years ago, like you're an entirely new person." And he was right.

At that point, I had graduated from my therapy sessions. I was told I was subclinical at this point, so I was good. I was able to go back home, wrap up my PhD work. I actually interviewed for a job at the Allen Institute, got offered the job, accepted it, finished my PhD, drove across the country to Washington. Everything ended up great.

And if you go back, in my PhD acknowledgments, not only do I have my mentors and faculty and family and friends who I have written in there, I also have my OCD therapist, Chris and Hannah, written in there because none of this would have been possible without them.

Thank you.