so interesting that the standard talk therapy can often make things worse--I've had that experience. There was a great article in The Boston Globe today about this very subject: it's a little long for a post, but here it is:
"How I learned to live with OCD
I didn’t realize my obsessive need to analyze every passing thought was a sign of something more than anxiety.
By Rachel Leopold Robinson
As a child, I was always anxious and risk-averse. Sleepovers, field trips, stomach bugs, and the school nurse (she reminded me of stomach bugs) were just a few of the things that scared me. As a rule, I didn’t ride on roller coasters, go to overnight camp, see movies about illnesses, or watch fireworks.
Being an anxious child gave way to being an anxious adult. I constantly worried about making mistakes, undercooking chicken, and, strangely even to me, the idea that I could one day lose control and take my own life, though I desperately did not want to. My thinking was often rigid and pessimistic, and I spun endlessly on every problem and decision, hunting hungrily for an ever-elusive right answer.
Yet, in 2020, at the age of 31, when my therapist suggested I might have obsessive compulsive disorder, I was skeptical. If I had OCD, why wasn’t I washing my hands incessantly, turning the lights on and off a specific number of times before leaving the house, and organizing my desk meticulously, as I had seen OCD portrayed in the movies? And weren’t we all “a little bit OCD’’ when we planned projects carefully and insisted on the Oxford comma?
At the same time, I was dimly aware that some of my family members had OCD, and for them it was treated as a grim prognosis, eliminating hope or the expectation that they could lead a full life. I was left with the conflicting sense that OCD was no big deal, maybe even desirable — that is, until you were diagnosed with OCD, in which case it was a death sentence.
OCD, as I would learn in the following year, is neither Order Your Coffin nor Oxford Comma Disorder. It’s a painful and often debilitating condition in which persistent unwanted thoughts and feelings (obsessions) cause extreme anxiety and drive the sufferer to engage in behaviors (compulsions) in an attempt to alleviate this anxiety. Nearly everyone has intrusive thoughts from time to time, like “What if I threw myself in front of the subway?’’ or an image of your grandma while you’re having sex. The neurotypical mind will quickly dismiss these thoughts as weird or funny, requiring no further analysis, and move on. If the brain were an email platform, these thoughts would be marked spam or even missed by the recipient entirely.
But in the OCD mind, these thoughts get stuck. In keeping with the email analogy, it’s as if they’re moved from spam to your inbox and marked “important.’’ They cause extreme distress and demand analysis: “Is that true?’’ “Would I do that?’’ “What does it mean about me that I had that thought?’’ Obsessions are often about topics like violence, sex, and contamination, but they can be about anything. The topic doesn’t actually matter. OCD is a hardware problem, a snafu in how we relate to our thoughts.
The exact cause of OCD is still unknown, but research suggests that brain biology and genetics play a role. The result is a persistent, pernicious doubt that can be applied to anything and everything: Would I hurt someone? Am I a bad person? Will I fall out of love with my partner? While neurotypical people can simply accept that they cannot have the answers to these questions and trust themselves to act in accordance with their values, sufferers of what’s often called the “doubt disorder’’ are desperate for certainty.
A compulsion is anything an OCD sufferer does in an attempt to achieve this certainty and relieve the anxiety caused by obsessions. Compulsions can be physical, like checking locks, putting objects in a specific order, or the stereotypical handwashing.
They can also be mental, and thus invisible, like reassuring yourself, reviewing situations, checking feelings and sensations, and replacing “bad’’ thoughts with “good’’ ones. The common representation of OCD as a few physical compulsions, sometimes laughed off, belies what’s happening beneath the surface: severe distress that has been aptly compared to “a stabbing pain on the conscience,’’ and an urge to get rid of it so strong that it defies logic. Compulsions do relieve anxiety, but they are only a Pyrrhic victory. The anxiety always comes back because in the end, we cannot have complete certainty about anything and there is little we can control.
Although OCD is different from its typical, often cartoonish, portrayal, it is not hopeless, thanks to a treatment developed in the 1970s: exposure and response prevention (ERP). This is a type of cognitive behavioral therapy in which you deliberately put yourself in situations that provoke anxiety and then avoid responding to it with compulsions. Paradoxically, rather than fight, avoid, argue with, or push away what terrifies you the most, the treatment for OCD is to agree, lean in, go toward.
Since my diagnosis, I have done ERP, aided by medication and under the guidance of my brilliant therapist, who — by some stroke of luck, since I didn’t realize I had OCD when I stumbled into therapy in 2020 — happens to be an OCD expert. I have taken the leap to abandon familiar yet destructive thought patterns and had the exhilarating experience of feeling my brain change. I have learned to practice mindfulness, the judgment-free awareness of what is happening in the present moment, which complements ERP by reinforcing that it’s normal for our minds to be a cacophony and that we can choose which voices we pay attention to. I have learned that while each new obsession that pops up may feel unique, it is not.
It’s all just a cover of the same bad song. And by now, I know the lyrics."
Rachel Leopold Robinson is an ed tech product manager and playwright based in New York City.
Thank you for writing this! OCD is so often misunderstood and it felt very validating to read your explanation.
I also realize just how lucky I am that my parents got me in to CBT when I was young, which gave me a solid foundation to content with OCD as an adult. I’ve had a few different therapists over the years as I’ve moved and/or aged out, and you hit the nail on the head for why some of them worked and some did not. I hadn’t realized that some of them actually fed my obsessions until you said it, and it felt so true for me.
I’ve learned that OCD evolves as we do, which can make it so hard to diagnose/identify. So glad you were able to get the support you needed!
Thank you for sharing your experience. Ever since I’ve had my son I’ve noticed intrusive thoughts like never before. I’ve done some training in ERP which has really helped me notice them as they are but I had all sorts of rituals when we was young, especially around
checking the monitor. It was a time. 🫠 I will still have them but not as frequent and I rarely engage in the checking although I reeeeeeeally want to sometimes.
Thank you so much for sharing your OCD story! There are so many parallels here to my husband's experience, which I wrote about in a New York Times Modern Love story a few years back, and which we both write about now on Substack. Hopefully we can dispel some of these persistent myths about OCD so that more people can find treatment sooner!
Oh I have to look up the Modern Love article, thank you for letting me know! I am also trying to add to my resource list to share with clients as well.
Thank you for sharing. My mother was diagnosed with OCD in her early 40s, after decades of intrusive thoughts. It never made sense to me — her outward behaviors toward loved ones were (and remain) so much more like borderline personality disorder, which often has intrusive thoughts as a symptom. But I also am skeptical of DSM diagnoses in general - I have never felt she fit well into any one bucket, you know?
You can meet criteria for OCD and another diagnosis at the same time. OCD often occurs alongside other significant concerns. But you are so right, the DSM is certainly flawed...who knows how we will be talking about all these phenomena 50 years from now. In general, I try not to get too hung up on labels, but in the case of this disorder, I find its almost always really validating for people to have an accurate description of their experience, and helps them connect with the right help and an understanding community.
No diagnosis is an excuse for abusive and harmful behavior though.
so interesting that the standard talk therapy can often make things worse--I've had that experience. There was a great article in The Boston Globe today about this very subject: it's a little long for a post, but here it is:
"How I learned to live with OCD
I didn’t realize my obsessive need to analyze every passing thought was a sign of something more than anxiety.
By Rachel Leopold Robinson
As a child, I was always anxious and risk-averse. Sleepovers, field trips, stomach bugs, and the school nurse (she reminded me of stomach bugs) were just a few of the things that scared me. As a rule, I didn’t ride on roller coasters, go to overnight camp, see movies about illnesses, or watch fireworks.
Being an anxious child gave way to being an anxious adult. I constantly worried about making mistakes, undercooking chicken, and, strangely even to me, the idea that I could one day lose control and take my own life, though I desperately did not want to. My thinking was often rigid and pessimistic, and I spun endlessly on every problem and decision, hunting hungrily for an ever-elusive right answer.
Yet, in 2020, at the age of 31, when my therapist suggested I might have obsessive compulsive disorder, I was skeptical. If I had OCD, why wasn’t I washing my hands incessantly, turning the lights on and off a specific number of times before leaving the house, and organizing my desk meticulously, as I had seen OCD portrayed in the movies? And weren’t we all “a little bit OCD’’ when we planned projects carefully and insisted on the Oxford comma?
At the same time, I was dimly aware that some of my family members had OCD, and for them it was treated as a grim prognosis, eliminating hope or the expectation that they could lead a full life. I was left with the conflicting sense that OCD was no big deal, maybe even desirable — that is, until you were diagnosed with OCD, in which case it was a death sentence.
OCD, as I would learn in the following year, is neither Order Your Coffin nor Oxford Comma Disorder. It’s a painful and often debilitating condition in which persistent unwanted thoughts and feelings (obsessions) cause extreme anxiety and drive the sufferer to engage in behaviors (compulsions) in an attempt to alleviate this anxiety. Nearly everyone has intrusive thoughts from time to time, like “What if I threw myself in front of the subway?’’ or an image of your grandma while you’re having sex. The neurotypical mind will quickly dismiss these thoughts as weird or funny, requiring no further analysis, and move on. If the brain were an email platform, these thoughts would be marked spam or even missed by the recipient entirely.
But in the OCD mind, these thoughts get stuck. In keeping with the email analogy, it’s as if they’re moved from spam to your inbox and marked “important.’’ They cause extreme distress and demand analysis: “Is that true?’’ “Would I do that?’’ “What does it mean about me that I had that thought?’’ Obsessions are often about topics like violence, sex, and contamination, but they can be about anything. The topic doesn’t actually matter. OCD is a hardware problem, a snafu in how we relate to our thoughts.
The exact cause of OCD is still unknown, but research suggests that brain biology and genetics play a role. The result is a persistent, pernicious doubt that can be applied to anything and everything: Would I hurt someone? Am I a bad person? Will I fall out of love with my partner? While neurotypical people can simply accept that they cannot have the answers to these questions and trust themselves to act in accordance with their values, sufferers of what’s often called the “doubt disorder’’ are desperate for certainty.
A compulsion is anything an OCD sufferer does in an attempt to achieve this certainty and relieve the anxiety caused by obsessions. Compulsions can be physical, like checking locks, putting objects in a specific order, or the stereotypical handwashing.
They can also be mental, and thus invisible, like reassuring yourself, reviewing situations, checking feelings and sensations, and replacing “bad’’ thoughts with “good’’ ones. The common representation of OCD as a few physical compulsions, sometimes laughed off, belies what’s happening beneath the surface: severe distress that has been aptly compared to “a stabbing pain on the conscience,’’ and an urge to get rid of it so strong that it defies logic. Compulsions do relieve anxiety, but they are only a Pyrrhic victory. The anxiety always comes back because in the end, we cannot have complete certainty about anything and there is little we can control.
Although OCD is different from its typical, often cartoonish, portrayal, it is not hopeless, thanks to a treatment developed in the 1970s: exposure and response prevention (ERP). This is a type of cognitive behavioral therapy in which you deliberately put yourself in situations that provoke anxiety and then avoid responding to it with compulsions. Paradoxically, rather than fight, avoid, argue with, or push away what terrifies you the most, the treatment for OCD is to agree, lean in, go toward.
Since my diagnosis, I have done ERP, aided by medication and under the guidance of my brilliant therapist, who — by some stroke of luck, since I didn’t realize I had OCD when I stumbled into therapy in 2020 — happens to be an OCD expert. I have taken the leap to abandon familiar yet destructive thought patterns and had the exhilarating experience of feeling my brain change. I have learned to practice mindfulness, the judgment-free awareness of what is happening in the present moment, which complements ERP by reinforcing that it’s normal for our minds to be a cacophony and that we can choose which voices we pay attention to. I have learned that while each new obsession that pops up may feel unique, it is not.
It’s all just a cover of the same bad song. And by now, I know the lyrics."
Rachel Leopold Robinson is an ed tech product manager and playwright based in New York City.
Thank you for sharing this Jan! I am so glad that OCD is getting more attention.
This is me in a post.
My therapist often encouraged me to see the thoughts as clouds and to watch them float by.
It never felt like enough.
I am sorry you can relate Jennifer. It's really tough.
This was loaded with a whole lot of “I didn’t know that!” Thanks for opening my eyes to seeing things differently
Oh I'm glad! This is such a misunderstood disorder and I want to spread knowledge and resources.
Thank you for writing this! OCD is so often misunderstood and it felt very validating to read your explanation.
I also realize just how lucky I am that my parents got me in to CBT when I was young, which gave me a solid foundation to content with OCD as an adult. I’ve had a few different therapists over the years as I’ve moved and/or aged out, and you hit the nail on the head for why some of them worked and some did not. I hadn’t realized that some of them actually fed my obsessions until you said it, and it felt so true for me.
I’ve learned that OCD evolves as we do, which can make it so hard to diagnose/identify. So glad you were able to get the support you needed!
Thank you for reading and sharing your experience Lindsay! I think its helpful for so many of us to know that we are in good company :)
Thank you for sharing your experience. Ever since I’ve had my son I’ve noticed intrusive thoughts like never before. I’ve done some training in ERP which has really helped me notice them as they are but I had all sorts of rituals when we was young, especially around
checking the monitor. It was a time. 🫠 I will still have them but not as frequent and I rarely engage in the checking although I reeeeeeeally want to sometimes.
Oh yes, the monitor checking. I feel like there are so many tools that are intended to help but that can really wreak havoc on new parents' anxiety!
Thank you so much for sharing your OCD story! There are so many parallels here to my husband's experience, which I wrote about in a New York Times Modern Love story a few years back, and which we both write about now on Substack. Hopefully we can dispel some of these persistent myths about OCD so that more people can find treatment sooner!
Oh I have to look up the Modern Love article, thank you for letting me know! I am also trying to add to my resource list to share with clients as well.
I'll save you the trouble, here's the link! https://www.nytimes.com/2021/08/06/style/modern-love-marriage-stressed-by-obessive-compulsive-disorder.html
Thank you for sharing. My mother was diagnosed with OCD in her early 40s, after decades of intrusive thoughts. It never made sense to me — her outward behaviors toward loved ones were (and remain) so much more like borderline personality disorder, which often has intrusive thoughts as a symptom. But I also am skeptical of DSM diagnoses in general - I have never felt she fit well into any one bucket, you know?
You can meet criteria for OCD and another diagnosis at the same time. OCD often occurs alongside other significant concerns. But you are so right, the DSM is certainly flawed...who knows how we will be talking about all these phenomena 50 years from now. In general, I try not to get too hung up on labels, but in the case of this disorder, I find its almost always really validating for people to have an accurate description of their experience, and helps them connect with the right help and an understanding community.
No diagnosis is an excuse for abusive and harmful behavior though.