CW: Mental illness, Obsessive-Compulsive Disorder, Emetophobia (uncensored words associated with it)

Ah, 2020. You’ve not been good to us. Between a global pandemic, racial violence, and the fact that this is also an election year, it’s no surprise that many of us who experience mental illness are feeling heightened symptoms. I’ve seen more and more people being open about their experience with mental illness on social media this year, and that openness is something I think is important for others to see, whether they have also experienced it or not. 

In the spirit of vulnerability, I opened up my DMs on Instagram a few weeks ago to shed some light on my own experience with Obsessive-Compulsive Disorder (OCD). I first began having obsessive thoughts and compulsions when I was about six years old, but I was not officially diagnosed until I was 22. 

I’m now 32 years old, and OCD is something that will always be part of my life, but over the past 10 years, I’ve grown to understand it—and myself—so much better, and I’ve learned that being open about it can be beneficial to myself and others. Most importantly, I’ve learned that I should not be ashamed of this disorder; it’s part of me, and there is no reason to hide it.  

OCD, like most mental illnesses, is often misunderstood, misrepresented, and stigmatized. That’s why I decided to do my own little AMA (Ask Me Anything) via Instagram. I received questions, of course, but I also received several messages of support, as well as a handful of messages from people who shared their own OCD stories with me. Overall, it was a cathartic experience for me (and I think for a few others), and I’m happy I did it. So here are the questions and answers (questioners’ names not included), but I’d love to keep the discussion going even after this, so please consider my DMs open for mental health conversation any time. 

What are some of your compulsions, and what causes them? Is it like what I learned in school—that you are worried that if you don’t check the locks multiple times (for example) that something bad but unrelated to the actual compulsion will happen? / What are your tendencies? / What do you obsess over?

I combined these three questions because they’re all on the same topic. 

There are many different ways OCD can manifest, and many different “causes,” so I’ll clarify what it’s like for me. My OCD is most closely related to contamination OCD. Sufferers of this subtype are terrified of contamination by germs that might make them sick. I say mine is “closely related” and not exactly this type because it’s different for everyone. Learn more about other types of OCD and common compulsions here and here.

My OCD was born from a phobia of vomiting (or others vomiting), called emetophobia. So for me, any contamination fear I have is closely associated with food contamination that might cause food poisoning or any kind of illness that would involve vomiting. I do not fear germs in general, and if you sneeze near me, I wouldn’t even notice (except right now I would, because you should have a mask on!). 

I’m not afraid of just any old sickness. It’s only vomiting, and that phobia was likely caused by an unfortunate experience where another child threw up on me when I was in first grade. I only even know about this event because my mother told me about it a few years ago; I actually have zero memory of it happening, so clearly, it was traumatic for me in some way. My brain just totally blocked it. 

Given the nature of the phobia, my obsessive thoughts were centered on myself or someone near me throwing up. Is this rational? Not at all. Did my brain care? Nope. I was afraid of going to school for a period as a child because other kids might get sick, meaning I’d probably catch whatever they had. This is where the compulsions came in. In order to avoid those spiraling anxious thoughts, my brain would tell me that I had to do certain things or complete certain actions or else. Or else I’d certainly be sick myself. 

When I was a child, most of my compulsions had to do with counting, and all of my counting came in sets of threes (usually, three sets of three). I’d do this with things that others were unlikely to notice because, let’s face it, doing things nine times can raise some eyebrows. I would do things like: tap my fingers a certain number of times on a surface, clench my hands (or other muscles) a certain number of times, have to blink a certain number of times in different scenarios (like before we’d get to the next stop sign on a car ride or during a commercial break on TV), and have to have the volume level at a particular number on the TV or radio. I also had several compulsions around spatial orientation. For example, I had to get in and out of bed a very particular way and in a certain place, and if I had to turn around 180 degrees to do something, I’d have to turn back the same way I came (like I would never turn around 360 degrees). Imagine trying to do that in PE class while doing the Hokey-Pokey and not turning yourself around. That’s what it’s all about!

Later on, as a teen and into early adulthood, the compulsions moved away from counting and more toward numbers in general. The volume thing was still a major compulsion for me, but other compulsions had nothing to do with numbers. It would be more like feeling that each thing I chose (the cup I drank from, the pillow I slept on, the shirt I wore that day) could affect whether or not I’d throw up. So I’d choose things that my OCD said were “good,” even though there’s no relation between that compulsion and the thing actually happening. 

Now, I experience the obsessive side much more than the compulsive side. I only ever have compulsions occasionally, but the obsession is still there, especially during more stressful times in my life. I can usually recognize a compulsion when it pops up, and I’ve learned through therapy how to not entertain them. 

How did you manage your obsessions/anxieties in a stressful environment? 

In general, the more stressful the environment is for me, the more I experience obsessive thought patterns. This is where OCD gets tricky and doesn’t fit into a box. While the phobia at the center of my OCD has to do with vomiting, obsessive thought patterns can occur about anything. So while my compulsions are usually done to “avoid” something to do with the phobia itself, the pattern of racing/unwanted thoughts can be about anything else. 

So, for example, during this pandemic, my thoughts could race and spiral on something like an older family member getting very sick and not being able to help them. That has nothing to do with my phobia, but the real stress of the world situation can make me obsess over that or something similar. 

So in any stressful situation, I try to recognize when I feel those thoughts happening and tell myself that essentially, “This is my brain playing a trick on me. This is OCD.” If I can talk myself out of the danger being completely real and present, it helps me break that thought pattern. However, the more anxious I’m already feeling, the harder that is to do, as anyone with anxiety knows. 

Do you see a therapist regularly? Do you take medication? Do they even have medication indicated for OCD, or is it the usual suspects for meds (Lexapro, Xanax, Paxil, etc.)?

Yes. I do see a therapist regularly, and I have seen one regularly or semi-regularly since I was first diagnosed. I love therapy, and I’m a major advocate for everyone trying it (see more on this at the end of the post). It’s been incredibly beneficial for me in every area of my life. 90% of the time in therapy now, I don’t even talk about OCD. Even when everything in my life is perfectly wonderful and all of my symptoms are quiet, I still go. Therapy is awesome. 

I do not currently take a daily medication for OCD, but I have in the past. When I was in graduate school and for a while after, I worked through exposure therapy with two different therapists. In order to be able to handle those exposures, it was recommended that I take a daily medication to help my brain take on the fear and anxiety that would come with them and help me learn how to have “normal” fear responses. It took a couple of tries to find the right medication, but eventually I found one that worked well for me, and I took it for about two years. 

The “usual suspects” for OCD medication (in my experience) are various types of medications better known for being anti-depressants (I was on Prozac). What some anti-depressants can do for OCD is help tremendously with the obsessive component. While an unmedicated brain might spiral into obsessive patterns, a medicated one can have a bad thought and let it go. That’s what it was like for me, and that made my compulsions almost nonexistent because I couldn’t obsess. 

That said, there are medications that are more frequently prescribed for OCD patients than others. It all depends on the individual, the type of OCD they have, and what other related mental or physical illnesses they have. I am not an expert on medication and have only had that limited experience with it, so I would always recommend speaking to a psychiatrist to get the lay of the land if someone thinks they should try medication. 

Also, I totally bought into the stigma surrounding medication for mental health for a long time. I was resistant to taking anything, but if I’d just tried it earlier, I’d likely have been able to do the type of therapy I needed sooner, and I’d have felt relief sooner. If you had the flu, you’d take medication. There’s no shame in taking it for your mental health too.

Therapy is the reason I can live a very normal life and function very highly today. I’m glad I went when I did, and I even wish I’d gone sooner. Today, when I tell someone I have OCD, their typical response is that they’d never have known. That’s probably not what they would have said 20 years ago. (That said, please remember that many mental illnesses are completely invisible, and their sufferers often go to great lengths to keep them that way. So there is usually no obvious way to tell if someone has a mental illness.)

Do you have any accompanying disorders?

I experience anxiety in general, but it’s manageable. Like I said above though, I still see a therapist no matter what. 

How did you find out you have OCD?

I kind of always knew when I was a child that the things I was doing were different. But being that young, I had no idea what it was. I remember seeing one of those daytime talk shows interviewing OCD sufferers when I was 10-12 or so, and I thought, “That sounds like me.” But still, I didn’t really know. I just knew I had a really intense fear that others didn’t seem to have, and that I had to do things to keep that fear from coming true.

I first saw a therapist at 22 when I was in grad school for my MA. The stress of the environment and being in a brand new place drove my anxiety into high gear in a way I hadn’t experienced in years. Suddenly I was thinking about that fear of vomiting again, and I was thinking about it a lot. I remember getting a stomach ache when I was on campus one day and just totally panicking. I knew I didn’t want to live with that fear and that it wasn’t something I was able to control on my own. So I asked for help. 

It took all of one appointment to get that diagnosis, and it was honestly such a relief. I knew what it was now. And I learned that emetophobia is actually a pretty common phobia. I never even knew it had a name before that. 

Can it give you anxiety going out and about and having to work through this in public? 

The only thing stressful about going out in public right now is the pandemic, so I stay distant as much as I can, and that’s not my OCD talking. That’s just me being as safe as I can be in the ways I feel most comfortable with. 

In the past though, I used to have major anxiety about getting sick and not being at my own house for that. So if I was at school or an event where it could take me a while to get home, anxiety around feeling nauseated would rise. 

This is something I don’t experience anymore, and in fact, I love to travel and feel comfortable going anywhere in the world.  

Do you hate it when people casually say “I’m OCD” when they really aren’t?

The short answer is yes. I do hate it for a few reasons.

1) OCD is not something you are, it’s something you have, and that thing you have is a disorder, not a cute personality quirk or a preference for things being clean. 

2) Saying “I’m so OCD about (fill in the blank)” trivializes the actual experience of people who suffer from OCD. OCD can be completely debilitating. It can control your every movement and decision (it was like this for me at a few different points in my life). It can fill up all the space in your brain so that you can’t focus or think about anything else. It can be incredibly lonely. People who suffer from this deserve better than those trivializing comments. It’s a difficult disorder, and it should never be a punchline. 

3) The more that people continue saying things like this, the more the misrepresentation of OCD will persist. It only increases others’ misunderstanding of OCD and mental illness more generally.

What is the biggest misconception that people have about it, other than it being synonymous with being Type A? 

Being synonymous with being Type A is a major one, for sure. I think TV shows and movies have also led people to believe that OCD revolves around being clean and organized. You can be messy and have OCD. I am not a neat person, and being neat does not make me feel less anxious. It doesn’t affect me at all. However, organization and symmetry compulsions are a real type of compulsion, but for those people, it’s not just that they prefer things in a certain order—it’s that if they don’t organize things that way or clean a certain way, something will happen. Their fear makes them do those things. 

This gets at the previous question: That’s why it’s not cool when people casually say “I’m so OCD because I arrange my closet by color” or something like that. Does it feel like a matter of life and death if you don’t organize it that way? If not, that’s not OCD, and calling it OCD only perpetuates OCD stereotypes and misconceptions.

I also don’t think that many people realize how many different subsets of OCD there are. Contamination OCD is thought to be the most common type. There is also harm OCD (self or others), sexual thoughts/orientation OCD, hoarding, checking, religious OCD, obsessions without visible compulsions (“pure O”), and more. 

Thank you for sending me your honest and thoughtful questions, and for sharing your own stories of struggle and triumph with me. If I left out your question, it was not intentional. Please let me know, and will answer. Again, I’m happy to keep the conversation going. Feel free to comment here if you’re comfortable in this forum, or if you’d rather chat privately, DM me on Instagram. 

I am fortunate to be able to have access to mental health care, but that is not the reality for everyone. Access to mental health care can be very hard to come by. If you are fortunate enough to have benefited from therapy, please consider donating to organizations that help less privileged people get the help they need. You can find some of those resources here.