I swear reading your substack sometimes feels like looking into a mirror. I also have “pure OCD” which went undetected during my teen years and early 20s. For many years, I was terrified I was secretly trans, because I couldn’t “prove” that I knew my gender identity. It was absolute hell and I shrank into myself, crying myself to sleep every night, trying different masculine voices to check if they “fit” - and this was all something that I couldn’t even begin to explain to friends (I had and have no problem with trans people at all!) I knew people wouldn’t understand.
Like you, I found forums and this led to extremely toxic, late night reassurance seeking. Eventually, my obsessions shifted and I began to see a CBT specialist which helped a lot. One thing that no one talks about with OCD is what to do when one of your obsessions comes true. I was worried about infertility for a year or two, and then - I couldn’t conceive and had to do fertility treatments. That was a real mind fuck. I have to remind myself every day that I didn’t cause it nor did I “predict” it.
Not sure where I’m going with this, except to say thank you for this post! I’ve really enjoyed subscribing and many of your posts really resonate.
Signed, an early 30s soon to be mom who also daydreamed about being a melancholy Victorian waif, struggles with making new friends, has zero passion for any of my jobs, and probably has ADHD to boot
I learned that in this post!! How did you cope? It took me so long to accept it... think I've finally come to terms with the fact that the universe is cruel and random, and sometimes I'm going to be on the wrong side of statistics (regardless of the nature of my OCD obsession du jour). Glad IVF worked for you :)
People not understanding how intrusive thoughts work is infuriating. It isn't bad or naughty things, it is thoughts that are destructive to your sense of self
The hardest thing about ERP (Exposure-Response-Prevention) is when one has low to zero insight. That means that you are totally convinced that your "obsessions" aren't merely obsessions, and that your associated compulsions really are addressing your actual fears.
If one is convinced that one's compulsive responses are actually "doing something," then testing that by withholding the compulsive behavior appears insane or irrational. Obsessive concerns are never about trivial matters. If something is really important, then it makes sense to be "very" concerned about it. Getting HIV, passing on your highly dangerous disease to someone else, that your husband may have had a car accident, that your eating contaminated food are all matters of importance. You would be crazy to not take note of them.
Given the vital importance of one's perceived obsessions, it makes sense to try to do something about them. In some cases, people with OCD come up with "crazy" compulsions. CHH's straw incident is one of them. Her parent's and brother's health are important. She ought to be concerned about them. That she had influence over their health by her selection of a straw is "crazy" and she readily recognized it. This makes it easier to extinguish.
This is much more difficult in other cases. Germ theory has made matters much worse. Now we have a secret, invisible mechanism whereby sickness can be transmitted. A situation ripe for OCD harvest. Someone might hold their hands aloft all day in the expectation that they are minimizing contamination on their hands, or eat food only by dropping it into their mouth, or opening doors with their elbows. Such a person is convinced that they are protecting both themselves and others. And it seems to be working: no one is getting sick.
A person with contamination OCD regards normies as crazy. And when you live with and try to think like someone with contamination OCD, one realizes that maybe we are a little "crazy." Essentially, we have adopted habits about invisible things that appear to work. How long do you wash your hands? How did you come by that habit? What about the storage of food or how long you cook it. Have any us actually tried to test our habits? No, we haven't. We're just people of habit. From the perspective of the contamination OCD "unthinking brutes," because, believe me, someone with contamination OCD is thinking and watching ALL day long. What surfaces did they touch, who or what touched that surface? How does one go about cleaning up the "mess" that is everywhere?
All three of my daughters were diagnosed with mild OCD as teens. It took different forms with each one.
The eldest was constantly convinced that she was failing all of her classes. She would lose sleep over this, and had constant panic attacks about her grades. She graduated with a 4.44 GPA. In college, she continued to fret about her grades and if Covid hadn't happened and caused her to finish her last year remotely, she probably would have had to withdraw due to her mental health. She graduated in three years, with a 3.97 GPA.
The middle one had a lot of health anxiety. She was constantly convinced she had cancer, heart disease, or was dying from some sort of infection that had no symptoms. It was always worse when she slept over at a friends house - I can't tell you how many 3 AM pick-ups I had to do at sleepovers, because she would see some sort of blemish on her body and become absolutely convinced it was cancer.
The youngest developed anorexia and became dangerously thin (she went into intensive outpatient treatment and has since fully recovered). She was convinced she was getting fatter and fatter, despite the fact she was skin and bones and weighed 86 pounds.
I think my mother had undiagnosed OCD; I remember she had a lot of weird rituals about eating, and she had a weird fear that she might pick up a fork or spoon and stab herself in the eye. We used to laugh about mom's quirks, but I wonder...
My one personal experience with OCD-ish thoughts was right after my first daughter was born. I was walking downtown when suddenly I thought "what if a car pulls into a parking spot but the driver loses control and drives up onto the sidewalk and runs over the baby carriage?" I started shaking with fear, broke out in a cold sweat, and could barely make it home because the idea of a car randomly driving onto the sidewalk and crushing my baby seemed like a completely rational thing to be afraid of. I was terrified to walk on the sidewalk for several days. Fortunately, after my hormones calmed down a bit, I realized that was a highly unlikely scenario. But, it gave me a just a tiny bit of insight into how horrible it must be to have OCD.
Ahhhh, I was diagnosed at 16 after finally learning what it was at 15 or so through YM magazine. I spent a whole summer of my childhood in a mildewey basement on purpose because I was afraid any single white cloud could turn into a funnel cloud at any time. I also refused to touch anyone in 3rd grade because I was afraid they'd give me tuberculosis. In 1991. Fun stuff! Lol. I loved reading that because it's rare to find someone describe the absurdity of OCD so well.
I wrote about my tornado thing and my later obsession with the end of the world a while back, too:
Working my way through your previous pieces after signing up and sort of cathartically discussing all of my similar issues here in your comment section, lol ... while I don't quite have OCD, I became really obsessive about a (real!) health issue I had during pregnancy, and I still can't quite let it go. It surprisingly might get resolved soon with genetic testing, and if that happens I wonder what I'll do with the mental energy I've expended on this.
(Also, interestingly, I found that being a hysterical pregnant woman really helped me receive better care in this particular instance. I thankfully found a doctor who took my concerns seriously, but would also tell me when I just needed to chill out.)
Thank you, I really appreciate you writing about OCD. As someone who has experienced this condition for nearly 30 years, it really resonated with me. I recently found the courage to write about my own experience of it. If your interested, it can be found here:
i have generalized anxiety disorder but i really struggle with whether i have OCD or not. my obsessions are more obvious but my “compulsions” aren’t always straight forwardly clear for a diagnosis (usually just rumination or i’m able to move past them). either way this helped me to hear that you’ve been able to cope and figure things out a bit better. i’ve tried talking to my therapist and psychiatrist about this stuff but they haven’t had any more insight than me. i guess i don’t know if it’s worth trying to pursue testing or something. thanks for sharing ur experience <3
Definitely makes me thoughtful about the sort of thoughts my mind comes up with. Can absolutely relate to worrying about loved ones dying. I remember being in middle school and having a full blown breakdown by the landline in my kitchen because my parents weren’t home by 9 and weren’t picking up the phone. Of course, I was convinced they were dead. Anyway, thanks for sharing—these sorts of personal stories often offer much more value than sterile descriptions on medical websites.
This hits right at home. I am 16 and my compulsions started when I was 10 or 11. It has not been more than a year that I have realized that I have OCD. I may have been younger than 10 when I started organizing everything. I would instantly know if someone would even touch my things. But little did I know that it would be hell of a ride and way, way more than just organizing. My compulsions fairly include tapping my right foot 3 times before going out of the house , washing my hands 3 times and closing and opening the tap 3 times and basically doing everything 3 times.
First OCD related substack post that I read and it just describes my thoughts.
I didn’t know I had OCD until after my teenage son’s life was overtaken by his own OCD. My memories throughout my life, though, are organized by what I was afraid of. The rabid dog years, the HIV from a blood transfusion I’d had years, the nuclear war years, the multiple bedbug periods which can be further narrowed down by whether I attempted to hire a bedbug sniffing dog (apparently the handler doesn’t want your money without *SIGNS*) or whether I collapsed in tears in a hotel room and my husband started yelling.
Years of talk therapy and no one suggested it. My son falling apart didn’t even get me thinking about a genetic link. You know what tipped me off? Reading about “hit and run OCD.” Turns out if going over a speed bump prompts you to circle the block and check for a body, that’s not just a quirk. 🤦♀️
Germaphobia is weird too. It doesn’t necessarily make you cleaner. I will have a full-on panic attack if I open a package of raw chicken and juice spatters out, but partly because that’s the moment I see the mess and how hard it will be to disinfect everywhere. Ever since I read an article about how you should disinfect your sink after cleaning pet bowls, I clean the dog bowl LESS OFTEN so I don’t expose myself to whatever godawful think I was supposed to be washing off. My kid’s germ phase led to piles of dirty laundry he was afraid to touch. He would throw fits about touching dirty dishes but he could leave them in his room no problem. If this made me a neatnik I’d find a bright side there but alas, no.
I swear reading your substack sometimes feels like looking into a mirror. I also have “pure OCD” which went undetected during my teen years and early 20s. For many years, I was terrified I was secretly trans, because I couldn’t “prove” that I knew my gender identity. It was absolute hell and I shrank into myself, crying myself to sleep every night, trying different masculine voices to check if they “fit” - and this was all something that I couldn’t even begin to explain to friends (I had and have no problem with trans people at all!) I knew people wouldn’t understand.
Like you, I found forums and this led to extremely toxic, late night reassurance seeking. Eventually, my obsessions shifted and I began to see a CBT specialist which helped a lot. One thing that no one talks about with OCD is what to do when one of your obsessions comes true. I was worried about infertility for a year or two, and then - I couldn’t conceive and had to do fertility treatments. That was a real mind fuck. I have to remind myself every day that I didn’t cause it nor did I “predict” it.
Not sure where I’m going with this, except to say thank you for this post! I’ve really enjoyed subscribing and many of your posts really resonate.
Signed, an early 30s soon to be mom who also daydreamed about being a melancholy Victorian waif, struggles with making new friends, has zero passion for any of my jobs, and probably has ADHD to boot
Did you know I needed IVF after having a fear of that too??
I learned that in this post!! How did you cope? It took me so long to accept it... think I've finally come to terms with the fact that the universe is cruel and random, and sometimes I'm going to be on the wrong side of statistics (regardless of the nature of my OCD obsession du jour). Glad IVF worked for you :)
I’ll be honest, I did not expect to get five dollars worth of reading out of this subscription but I really really do
This means SO much to me, thank you! There’s so much more to come too, my book is only 2 chapters in!
Seconded - this subscription is the best "value" of any newsletter I subscribe to, and hands-down the most fun.
Omg ❤️❤️❤️
People not understanding how intrusive thoughts work is infuriating. It isn't bad or naughty things, it is thoughts that are destructive to your sense of self
The hardest thing about ERP (Exposure-Response-Prevention) is when one has low to zero insight. That means that you are totally convinced that your "obsessions" aren't merely obsessions, and that your associated compulsions really are addressing your actual fears.
If one is convinced that one's compulsive responses are actually "doing something," then testing that by withholding the compulsive behavior appears insane or irrational. Obsessive concerns are never about trivial matters. If something is really important, then it makes sense to be "very" concerned about it. Getting HIV, passing on your highly dangerous disease to someone else, that your husband may have had a car accident, that your eating contaminated food are all matters of importance. You would be crazy to not take note of them.
Given the vital importance of one's perceived obsessions, it makes sense to try to do something about them. In some cases, people with OCD come up with "crazy" compulsions. CHH's straw incident is one of them. Her parent's and brother's health are important. She ought to be concerned about them. That she had influence over their health by her selection of a straw is "crazy" and she readily recognized it. This makes it easier to extinguish.
This is much more difficult in other cases. Germ theory has made matters much worse. Now we have a secret, invisible mechanism whereby sickness can be transmitted. A situation ripe for OCD harvest. Someone might hold their hands aloft all day in the expectation that they are minimizing contamination on their hands, or eat food only by dropping it into their mouth, or opening doors with their elbows. Such a person is convinced that they are protecting both themselves and others. And it seems to be working: no one is getting sick.
A person with contamination OCD regards normies as crazy. And when you live with and try to think like someone with contamination OCD, one realizes that maybe we are a little "crazy." Essentially, we have adopted habits about invisible things that appear to work. How long do you wash your hands? How did you come by that habit? What about the storage of food or how long you cook it. Have any us actually tried to test our habits? No, we haven't. We're just people of habit. From the perspective of the contamination OCD "unthinking brutes," because, believe me, someone with contamination OCD is thinking and watching ALL day long. What surfaces did they touch, who or what touched that surface? How does one go about cleaning up the "mess" that is everywhere?
All three of my daughters were diagnosed with mild OCD as teens. It took different forms with each one.
The eldest was constantly convinced that she was failing all of her classes. She would lose sleep over this, and had constant panic attacks about her grades. She graduated with a 4.44 GPA. In college, she continued to fret about her grades and if Covid hadn't happened and caused her to finish her last year remotely, she probably would have had to withdraw due to her mental health. She graduated in three years, with a 3.97 GPA.
The middle one had a lot of health anxiety. She was constantly convinced she had cancer, heart disease, or was dying from some sort of infection that had no symptoms. It was always worse when she slept over at a friends house - I can't tell you how many 3 AM pick-ups I had to do at sleepovers, because she would see some sort of blemish on her body and become absolutely convinced it was cancer.
The youngest developed anorexia and became dangerously thin (she went into intensive outpatient treatment and has since fully recovered). She was convinced she was getting fatter and fatter, despite the fact she was skin and bones and weighed 86 pounds.
I think my mother had undiagnosed OCD; I remember she had a lot of weird rituals about eating, and she had a weird fear that she might pick up a fork or spoon and stab herself in the eye. We used to laugh about mom's quirks, but I wonder...
My one personal experience with OCD-ish thoughts was right after my first daughter was born. I was walking downtown when suddenly I thought "what if a car pulls into a parking spot but the driver loses control and drives up onto the sidewalk and runs over the baby carriage?" I started shaking with fear, broke out in a cold sweat, and could barely make it home because the idea of a car randomly driving onto the sidewalk and crushing my baby seemed like a completely rational thing to be afraid of. I was terrified to walk on the sidewalk for several days. Fortunately, after my hormones calmed down a bit, I realized that was a highly unlikely scenario. But, it gave me a just a tiny bit of insight into how horrible it must be to have OCD.
Ahhhh, I was diagnosed at 16 after finally learning what it was at 15 or so through YM magazine. I spent a whole summer of my childhood in a mildewey basement on purpose because I was afraid any single white cloud could turn into a funnel cloud at any time. I also refused to touch anyone in 3rd grade because I was afraid they'd give me tuberculosis. In 1991. Fun stuff! Lol. I loved reading that because it's rare to find someone describe the absurdity of OCD so well.
I wrote about my tornado thing and my later obsession with the end of the world a while back, too:
https://open.substack.com/pub/lirpa/p/tornado-movies-and-tv-psychics?utm_source=share&utm_medium=android&r=2yesh
Working my way through your previous pieces after signing up and sort of cathartically discussing all of my similar issues here in your comment section, lol ... while I don't quite have OCD, I became really obsessive about a (real!) health issue I had during pregnancy, and I still can't quite let it go. It surprisingly might get resolved soon with genetic testing, and if that happens I wonder what I'll do with the mental energy I've expended on this.
(Also, interestingly, I found that being a hysterical pregnant woman really helped me receive better care in this particular instance. I thankfully found a doctor who took my concerns seriously, but would also tell me when I just needed to chill out.)
Thank you, I really appreciate you writing about OCD. As someone who has experienced this condition for nearly 30 years, it really resonated with me. I recently found the courage to write about my own experience of it. If your interested, it can be found here:
https://willgreenauthor.substack.com/p/ocd-the-highjacked-mind?r=8asw16&utm_medium=ios
This is so fucking important to share I’m going to cry
i have generalized anxiety disorder but i really struggle with whether i have OCD or not. my obsessions are more obvious but my “compulsions” aren’t always straight forwardly clear for a diagnosis (usually just rumination or i’m able to move past them). either way this helped me to hear that you’ve been able to cope and figure things out a bit better. i’ve tried talking to my therapist and psychiatrist about this stuff but they haven’t had any more insight than me. i guess i don’t know if it’s worth trying to pursue testing or something. thanks for sharing ur experience <3
Wow I did not expect to see the fear of being a cannibal mentioned, it got so bad that I became vegetarian and gag at the smell/sigh of meat.
Picking straws is a big one for me too!!! It has to be in the “right” spot in the dispenser/holder for me to grab it.
Definitely makes me thoughtful about the sort of thoughts my mind comes up with. Can absolutely relate to worrying about loved ones dying. I remember being in middle school and having a full blown breakdown by the landline in my kitchen because my parents weren’t home by 9 and weren’t picking up the phone. Of course, I was convinced they were dead. Anyway, thanks for sharing—these sorts of personal stories often offer much more value than sterile descriptions on medical websites.
I’ve never related to anything more 😭
This hits right at home. I am 16 and my compulsions started when I was 10 or 11. It has not been more than a year that I have realized that I have OCD. I may have been younger than 10 when I started organizing everything. I would instantly know if someone would even touch my things. But little did I know that it would be hell of a ride and way, way more than just organizing. My compulsions fairly include tapping my right foot 3 times before going out of the house , washing my hands 3 times and closing and opening the tap 3 times and basically doing everything 3 times.
First OCD related substack post that I read and it just describes my thoughts.
I didn’t know I had OCD until after my teenage son’s life was overtaken by his own OCD. My memories throughout my life, though, are organized by what I was afraid of. The rabid dog years, the HIV from a blood transfusion I’d had years, the nuclear war years, the multiple bedbug periods which can be further narrowed down by whether I attempted to hire a bedbug sniffing dog (apparently the handler doesn’t want your money without *SIGNS*) or whether I collapsed in tears in a hotel room and my husband started yelling.
Years of talk therapy and no one suggested it. My son falling apart didn’t even get me thinking about a genetic link. You know what tipped me off? Reading about “hit and run OCD.” Turns out if going over a speed bump prompts you to circle the block and check for a body, that’s not just a quirk. 🤦♀️
Germaphobia is weird too. It doesn’t necessarily make you cleaner. I will have a full-on panic attack if I open a package of raw chicken and juice spatters out, but partly because that’s the moment I see the mess and how hard it will be to disinfect everywhere. Ever since I read an article about how you should disinfect your sink after cleaning pet bowls, I clean the dog bowl LESS OFTEN so I don’t expose myself to whatever godawful think I was supposed to be washing off. My kid’s germ phase led to piles of dirty laundry he was afraid to touch. He would throw fits about touching dirty dishes but he could leave them in his room no problem. If this made me a neatnik I’d find a bright side there but alas, no.