"Quite Messy": What Living with OCD Is Really Like

Cristen Conger

The flood of listener responses to our "Obsessed with OCD" podcast confirmed one of the major themes of that episode: obsessive-compulsive disorder is highly common and highly misrepresented in popular culture. Offhand jokes about being "so OCD" about loading the dishwasher, organizing book shelves or maintaining a fastidious appearance undercut what it's really like for the estimated 176 million people around the world living with the disorder.

To continue our podcast conversation about how OCD truly impacts people's daily functioning from childhood, here are first-person perspectives Stuff Mom Never Told You listeners diagnosed with the disorder.

Tl;dr: OCD jokes, casual self-diagnosing and Monk references aren't helpful or appreciated.

Listener E. on how a successful woman's habits can easily mask OCD:

Like most people with OCD, I developed symptoms in childhood, but wasn't diagnosed until my early twenties. In my case, this was because I deliberately hid my symptoms, or at least masked how severe they were (as you rightly pointed out, this is easier to do with OCD than with most other mental illnesses). Also, I'm a successful woman, so I suspect that many of my symptoms were attributed to traditionally feminine virtues (cleanliness, being a good housekeeper, being organized and detail-oriented) or those associated with success (being organized, focused, disciplined). And I have to say, I think the organization and focus on detail that comes with my kind of OCD does make me a better student, writer, and researcher (I'm a professional writer and editor with a PhD in English). Plus, my house is really clean. ...It doesn't really bother me when people say, "Oh, I'm so OCD" when they like having a neat closet or a dishwasher loaded just so, but it does make me roll my eyes. I'm just jealous that they can joke about it.

Listener Chris on his OCD:

My symptoms are mostly related to checking things and what my wife and I call "magical thinking." For "checking things," I have to check the locks on the doors, ensure the doors are shut, check my wallet for my personal items, and validate that the gas is off on the stove. My magical thinking is related to the story you shared about the light switches and the rocks on the ground. My magical thinking is focused on safety in that I need to ensure that paper and other debris are not in the path of people. I will retrace my steps to pick up that small napkin on the ground in middle of the food court in the mall because if a person gets hurt due to my failure to pick it up, I will magically suffer a bad consequence. It will be my fault. Anyway, what I most appreciated about this episode is that you noted that OCD sufferers experience no joy because of our behaviors. For example, I will often lose sleep because I must check the doors. I'll pull on the front door to make sure it is locked. Usually I have to do this about five times before I am convinced it is locked. But wait! Now that I have pulled on the door, I might have opened it, so now I have to push the door several times to ensure it is closed. I'll go to bed and then I have to go back downstairs to make sure it is locked... and the cycle repeats. This is neither fun nor satisfying. P.S. I had to check your email address 10 times before I could send this message.

Listener Erin describes being married to someone with OCD:

My husband has OCD and it bothers me more than anything when people use the phrase "I'm a little OCD about...." People who say this have no idea what it is like to live with someone who has OCD.... It is easy for people to joke about being 'a little OCD' when they don't know how hard it actually is. Even our friends joke about how 'lucky' I am to never have to do housework. What they don't know is that even if I were to do any of the housework, my husband would have to redo it anyway. It's not that he doesn't trust me, but he needs to see for himself that things are clean. I see my husband struggle every day just to be normal. He has checklists that help him be able to leave the house, but it is still hard. I wish more people understood what having or living with someone who has OCD is like. I'm sure they wouldn't be so quick to joke.

Listener Scott notes that OCD isn't all about cleanliness:

Though I enjoyed the podcast, I really felt you focused on the very narrow aspect of OCD which would be the cleanliness aspect...another huge, embarrassing, yet important thing to discuss are intrusive thoughts. Terrible horrible thoughts that people are embarrassed to report and is a large reason why OCD can be misdiagnosed as depression, ADHD, or anxiety disorders. I certainly did not want to tell of my very intrusive, disgusting and disturbing thoughts of rape, sexual thoughts of a disturbing nature, or morbid violence and murder. An example I was told by my doctor was that a woman and her two sons had been hiking and were looking down at the edge of a cliff. Her OCD made her think about pushing them off. My mother, who is also possibly undiagnosed, is a hoarder and often had always wanted to blow out the Candles at Catholic Mass. In fact, OCD can manifest in the exact opposite direction in that one can actually be quite messy due to avoiding the anxiety of acknowledging the mess around them. I tend to be a little upset when people always talk about OCD and cleanliness without acknowledging that this is just a very small piece of the OCD puzzle.

Listener Rebecca on "pure O:"

I have had a version of OCD called "pure O" since childhood, and was finally diagnosed this past fall. Pure O is basically OCD with out the outward, physical compulsions. I spend hours and hours obsessing about all kinds of things, from the food that I eat to how my lesson plans are written out. I have had obsessions since I was a little girl. We once had our house "bombed" for fleas and without telling anyone I slowly but surely threw away or refused to touch any of my belongings that I imagined may have been exposed to the mysterious flea-killing chemicals. I spent 7 years in therapy with someone who didn't believe in OCD without compulsions, and it was an unbelievable relief to finally find someone who understood what was happening in my brain. I also have other anxiety issues and clinical depression, but am very high functioning and am trying to help spread the word so that others who have these disorders can get the help and compassion that they deserve.

Listener Whitney also experiences "pure O:"

Thank you so much for your wonderful episode on OCD. I was diagnosed at the age of 15. I suffer from a form of OCD known as "Pure O". I have intrusive thoughts of harming myself or loved ones, even though I am neither violent nor suicidal, and I've never really had compulsions (if you want further insight, I'd be happy to carry on a conversation with you, and it's also discussed in the first episode of another fantastic podcast called Invisibilia). I am very fortunate to have almost no symptoms 11 years later thanks to antidepressants and cognitive behavioral therapy.

Listener J. likens his OCD to superstitions:

OCD, at least for me, feels like a form of intense superstition; and, like other superstitions, it defies all logic...My mind chooses which are the "good" and "bad" thoughts based on my innermost fears, so OCD is often very personal, which is another reason to keep the details to myself. Besides that, people would probably think I'm crazy, even though I am perfectly capable of functioning in society: I have a girlfriend, job, family and I fought really hard to not let OCD interfere with any of these. I was diagnosed at 13 and in the beginning it was all about germs and washing hands. I went to doctors and even took pills, but they never really did anything for me. I decided I'd get better by myself when I was 18 and that's what I've been doing for the past few years, with good results. I am much better and in control now than a decade ago and I intend to keep fighting. As a man, I do my best for the women of my life and your podcast always helps me understand them more, but this time it helped me with my own struggles.

Listener T. on her search for a diagnosis:

I have a variant with fewer compulsive aspects and is much more grounded in intrusive thoughts and mental checking. As such it took me a loooong time to realize what was wrong with me. It's hard to remember any time before this was a problem, but looking back I think it started when I was 8 or 9 years old. After major depressive episodes throughout my teens and then bouncing between professionals, diagnoses and medications for years, I finally read (of all things) a Cracked article about OCD, and brought it up with a psychologist. I was diagnosed at 23. I am now practicing some of the mindfulness techniques that you spoke of and while it's very difficult, things are getting better. Thanks again for the podcast. OCD is constantly misrepresented in media and misunderstood by the public, and it's nice to hear people talking about it honestly and sympathetically. The idea that this is a quirk rather than a serious disorder is dangerous and very very annoying. People tend to be skeptical about my own problems because the idea of OCD and tidiness are so entwined that people have a hard time believing a messy bugger like me could have it.

Listener Abigail describes her OCD treatment:

I was diagnosed with OCD coupled with Generalized Anxiety Disorder in my early 20's. The things I felt/feel compelled to do in my mind will keep the general badness that my anxiety disorder makes me fear, from happening. My obsession is time. At the height of my suffering I could tell you on any given day, to the minute, what time I woke up, got in the shower, got out of the shower, got dressed... you get the idea. Then I was compelled to hit certain time markers. Getting delayed in unexpected traffic would send me into panic because I wouldn't hit my "getting to work" time marker for example. I sought treatment through cognitive therapy where the counselor taught me to treat my obsessions like a sarcastic teenager. So when my brain would go to "I'm going to be late to work, my boss will fire me, my husband will be disappointed and leave, then I'll never have kids and die alone" (yes this was a common thought string), my counselor taught me to consider this train of thought and, channeling my best sarcastic teenager voice, say "Yeah, right, your boss is going to fire you for being 5 minutes late? Whatever! Would he even notice? How many other people are constantly late, have they been fired?" etc. Then embrace how ridiculous it was and literally laugh at it. That coupled with a aversion therapy where she would actually let our sessions run 5 or 10 minutes long so I was late getting back to work, lead to me gradually taking control of these thoughts. Finally she let me keep a few small compulsions that were not disrupting my life but that I could go to for a quick fix and an early trigger warning that anxiety was looming. She also taught me the difference between my compulsions and things that I liked doing, like having a clean car, and why it was important to know the difference...As for people making jokes, I try to not let it bother me but I am frustrated when I try to talk about a real struggle I've had with OCD and people laugh it off like I'm joking.

Listener Katie is tired of fake OCD self-diagnosis:

Thank you so much for your podcast about the history, specifics, and popular culture of Obsessive Compulsive Disorder. I've lived my life around a fairly mild case of OCD since I was 9, and still cringe every time I hear someone try to hang a picture and whine, "I'm just so OCD about making it straight!" While I believe that most people do not mean any offense with their offhanded comments, I also think many Americans are unaware of the severity of this disorder or the fact that those who suffer with OCD know their compulsions are not rational and wish they could stop.

Likewise, listener M. urges people to take OCD more seriously:

...even though I think the ability to laugh at yourself is very important, I am totally in the OCD-is-not-funny camp. I actually got into it with people on Facebook a while back--there was a quiz someone had made called "How OCD are you?" and the whole thing was basically common misrepresentations and stereotypes of what OCD is. I commented on it, saying that the quiz really promoted incorrect information, and OCD is really not funny--it absolutely sucks having it. While many people agreed with me, I also got a lot of heat from people who really think it's no big deal. There definitely needs to be more education addressing OCD (and, I would argue, many other mental illnesses). I have heard some comments from people who think OCD--and mental illness in general--is nothing compared to "real" diseases, like cancer. One person once told me that OCD doesn't kill anyone, so it's not a big deal. Now, I certainly don't mean to compare OCD with terrible diseases like cancer, but as you mentioned on the podcast, people with OCD absolutely do take their own lives due to the utter pain and exhaustion of intrusive thoughts and compulsions. And even if they don't, without proper treatment, life can be just unbearable. I know, because I went through several debilitating episodes myself before being properly diagnosed and treated

Listen to the podcast: Obsessed with OCD