The Kind of OCD We Need to Talk About

For six years, I kept a secret that I was determined to take to my grave. I pretended I wasn’t constantly afraid. I made excuses when asked about my unusual behaviors. I was so hell-bent on avoiding being found out that I did everything I could to fool every psychologist, therapist, and doctor I encountered.

And the whole disaster started with one thought.

When I was eleven, while lying in bed, something along the lines of “F– G*d” popped into my brain. As the good-girl church acolyte that I was, I felt horrified. What did it mean that a sacrilegious thought like that could appear in my mind? I felt like I had to do everything I could to keep it from coming back or else that meant I was a bad person. I already felt incredibly guilty that it had happened even one time.

But as the days went on, the more I tried to resist thinking that thought again, the more often it happened and the more it evolved and mutated into increasingly offensive thoughts until they had some of the most explicit, blasphemous, sexual, and violent content imaginable. Everything I didn’t want to think, I ended up thinking. I fell into complete and utter despair.

I must want to think those thoughts because they keep happening, I reasoned with myself. I must be a horrible person.

Within a couple of months, my mind had became a constant cacophony of offensive thoughts. Every time I tried to think something normal, it got morphed into something upsetting. And whenever those thoughts happened, I felt like I had to cancel them out by thinking a good thought immediately afterwards. I hoped that if I kept trying to undo them, eventually the thoughts would leave me alone.

From the moment I woke up to the moment I finally fell asleep, I was in an epic battle to get the upper hand against my own mind. Every time I walked, the rhythm of my steps got matched to syllables of an offensive sentence I felt like I had to cancel. And when I said anything out loud, that, too, would morph into a bad thought in my mind that I’d have to cancel, thus forcing me into selective mutism. And at my absolute worst, I also had to be careful that I didn’t breathe in the wrong rhythm, either, or else I’d have to cancel out the resulting bad thought from that.

At twelve years old, I felt like I was going crazy.

When most people hear about Obsessive-Compulsive Disorder, they probably envision someone standing at a sink washing their hands over and over and over again. Or perhaps they think about someone who locks their house only to come back to check and re-check it half a dozen times. Or, most worryingly, perhaps people mistake “OCD” as synonymous with a cute personality quirk or a benign preference for order and cleanliness.

But in reality, OCD is a monster that will tear you to your core.

If you have OCD, you have obsessions (irrational fears or anxiety) that you try to neutralize by carrying out compulsions (rituals). The problem is that the compulsions only temporarily reduce your anxiety, because OCD is a liar. For example, you may be obsessed that you’ll contract a deadly disease, so at first, you wash your hands twice to be extra careful.

But then it won’t be long before OCD will ask: What if you weren’t thorough enough? So then you’ll wash another time, but then that “what-if” will keep coming back and your compulsions will escalate until you find yourself washing for multiple hours a day.

In my case, I had the Scrupulosity (Religious OCD) sub-type of Pure-O OCD. My obsession was to keep away the objectionable intrusive thoughts, and my compulsions were the mental rituals I did to neutralize them. It was all entirely hidden from the outside world.

Imagine someone sitting next to you and swearing and shouting every possible thing that will disturb you, all day long every single day no matter how many times you beg them to stop—that’s what living with severe Pure-O OCD was like.

The amazing thing about OCD is that you usually know it’s all irrational. I remember wondering why I felt like I had to do my rituals and follow my rules and no one else did. But the anxiety from the obsessions is so intense that you can’t help but give into the compulsions, however irrational, in order to find some relief.

The fear of the “bad thoughts” caused anxiety that was like a knife lodged in my soul that got twisted and thrust deeper every time I thought I messed up one of my compulsions. It was like being blindfolded and dangled out the door of an airplane with no parachute, just waiting to get pushed off unless I did my compulsions. It was like knowing someone was hiding in the house wanting to hurt me, but not knowing where they were hiding and when they’d pop out, and the compulsions were the only way to stop them.

Had my parents seen me washing my hands as often as I was doing my mental rituals, they would’ve figured out I had an extreme case of OCD. Unfortunately, I was so ashamed of my invisible struggles that it would be six years before I let anyone find out.

I got very lucky in that my anxiety over the thoughts and their frequency slowly died down over a few months without intervention, which is the opposite of how OCD usually works. Once I stopped getting unexplained fevers, I got my mind back, and this is because my OCD was triggered by infections—a phenomenon called PANS/PANDAS. Anytime someone has a sudden-onset of OCD, you should consider PANS/PANDAS, although some who have it have a gradual onset. Unfortunately, it took another eight years to find out I had PANS.

My OCD never completely went away even when I cleared the mysterious infections—it just became tolerable. I still spent my whole adolescence dealing with secret rules about what I had to do to keep a bad thought from reappearing, though the rules no longer impeded my ability to function.

I saw multiple therapists over the years for depression and ADD, but not once did any of them ask if I ever had repeated unwanted thoughts. If anyone ever asked about compulsions, they never explained that mental rituals counted as such. Most shameful of all, at one point, a group of psychologists from a renowned university evaluated me, and they, too, completely failed.

No one ever considered that maybe I was depressed and struggling to pay attention because I had untreated OCD.

Somehow, by seventeen, my mental illnesses finally became manageable, and I was sure I had a good life ahead of me. But then my nightmare happened all over again.

One afternoon, I became gripped with an intense fear that I’d committed an unforgivable sin. From then on, unwanted thoughts came rushing back and flooded my mind all day long, and I fell back into the constant war to get them to stop.

This time, there were new obsessions to go along with the religious ones. I became afraid of things falling on me and wouldn’t sit anywhere near light fixtures or classroom projectors or suspended speakers. I wouldn’t eat mushrooms, or anything that might have mushrooms, because I thought I’d get poisoned. I couldn’t even crack the car windows while driving or else I thought my belongings would go flying out. Scariest of all, every time I hit a bump in the road, I’d be frightened I’d accidentally hit a person or an animal.

I would pace around the house for hours trying to get the intrusive thoughts to stop. I fidgeted constantly during class because I felt like I needed to run away from my own mind. I’d spend all day writing and trying to stay distracted without taking a break, to the point it got flagged as a possible first manic episode—but it was all just a futile attempt to quiet my mind.

Why am I suddenly so scared all the time? I wondered to myself. What in the world just happened?

After two weeks of my extreme OCD, it finally crossed my mind that what I was experiencing wasn’t normal. What if I had a mental illness? I remembered reading something in Reader’s Digest months before about OCD involving repetitive, unwanted thoughts, so on a whim, I googled “OCD.”

And then my whole world both fell apart and came together all at once.

As soon as I read a description of Religious OCD (Scrupulosity) and Pure-O, I knew this is what had dogged me since I was eleven. I was relieved to know I wasn’t alone or crazy or a bad person—but I was completely terrified knowing without a doubt that I had to reveal my secret and get help.

It took two months to work up the courage to start Exposure-Response Prevention (ERP) therapy, which is the standard of care for OCD, and then another six months doing it to get my life back. But slowly but surely, my therapist and I pealed back the layers of the onion that was my OCD.

In ERP, it’s all about exposing yourself to tolerable levels of anxiety so that your brain slowly learns your obsessions pose no real threat to you. For example, at first, I was allowed to keep cancelling the bad thoughts, but I had to wait five seconds to do so. When that stopped causing anxiety, then it was ten seconds, then thirty seconds, and then a minute. And then not cancelling altogether no longer caused anxiety.

Ultimately, however, what got me out of my religious OCD was faith. And I’m not talking about, “I just got a little more faith and then God healed me.” I mean that I had to believe that God really didn’t care about the content of the intrusive thoughts at all. I had to learn to separate what was OCD versus what was a true spiritual conviction I held. I had to realize that the intrusive thoughts weren’t part of me and then have faith that there was no actual need to neutralize them.

And the moment I realized the thoughts had no power was the moment I was set free.

From then on, the ERP exercises were just a matter of undoing years and years of neural circuitry that had been conditioned to send me into panic if I didn’t carry out the compulsions or follow the OCD rules—but none of it truly scared me anymore.

Today, on OCD Awareness Week, I’m calling for more understanding of what OCD looks like so that more people will recognize it in themselves or in their kids who don’t know how to articulate what’s happening:

OCD may look like silence. It may look like refusing to do school. It may look like inattention because a kid is putting all her focus towards invisible compulsions. It may look like withdrawing to a bedroom and crying in fear or frustration. It may look like excessive praying. It may look like anger when someone unknowingly interrupts a compulsion. It may look like bizarre behaviors and uncharacteristic preferences. It may look like not eating. It may look like pacing and fidgeting. It may look like a kid telling you she’s scared and doesn’t know why.

Never forget that the worst of OCD is what someone will go to great lengths to hide—not the outwards signs themselves which you may see.

I encourage every parent to talk to their kids about mental health in the same way they talk about physical health. Anyone who has a kid needs to tell them that if they’re getting any upsetting thoughts, they’re not their fault, and they’re nothing to be ashamed of. Talk about OCD as a treatable condition that many, many people have.

But all of this being said, if you know someone with OCD, never pressure them to explain their rituals or obsessions, because they may feel deeply embarrassed. Instead, show them that you’re there to listen without judgement. And if it seems appropriate, offer to help find local professionals who can help, because no one should have to fight for their recovery on their own.

Seven years after my diagnosis, I like to think I’m a living testament to the fact that it’s possible to recover even from the worst, most hopeless cases of OCD. Until I knew I had OCD, I thought I would never get better. At my worst, I scored a 38 of 40 on the Yale-Brown OCD Scale, in which anything above 32 is considered extreme. Although to this day I sometimes get random OCD-type “what-ifs” popping into my head, now that I recognize them for what they are, I don’t give into the compulsions.

Thanks to therapy and the medical treatments to deal with PANS, I’m living a free life. I can think and talk and write and do whatever the heck I want without OCD stopping me, and I wish the same for every single person who gets this horrible disorder.

But in order to make this reality, we need professionals to know what Pure-O OCD and Scrupulosity look like. We need religious leaders to recognize OCD and stop telling people plagued by doubt and unwanted thoughts to “pray harder,” which only feeds the disorder and starves true faith. And most of all, we need to get rid of the stigma around taboo thoughts so people can speak up and get the help for their OCD that they need.


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9 thoughts on “The Kind of OCD We Need to Talk About

  1. “And at my absolute worst, I also had to be careful that I didn’t breathe in the wrong rhythm, either, or else I’d have to cancel out the resulting bad thought from that.”

    Oh man, this has been me for much of this year, but less so lately thankfully. Modifying and interrupting my breathing gave me the worst physical symptoms – headaches, exhaustion. I’m about to start trying medication tomorrow.

    “Every time I walked, the rhythm of my steps got matched to syllables of an offensive sentence I felt like I had to cancel.”

    This is amazing, I used to do this too. I haven’t walked much since 2012 due to knee injuries, so I forgot all about it.

    Thank you for this post. It’s really amazing when you find that somebody else has done one of your obscure rituals too, that you thought, surely nobody else has ever thought of!

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  2. This is a few of my children for sure. Thank you so much for the information, I will check into the therapy options here. Can I ask how you treated your pans/pandas?

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    1. Besides the CBT therapy to cope with the OCD component of PANS, I’ve treated PANS with IVIG, steroids, tonsillectomy, and antibiotics over the years. I also supplemented with high-dose fish oil and turmeric at various point of my journey, but monthly IVIG with 1 g of Solumedrol has had by far the strongest and longest-lasting effect. Everyone’s different. SSRI’s didn’t work for me, but I’m now on a cocktail of Wellbutrin, Lamictal, and Seroquel for lingering psych issues which closely resemble bipolar disorder––the psych meds didn’t help at all until the inflammation was under control, though.

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  3. I could have written this with only a few minor changes. And I started having these thoughts at the age of 6 – maybe even younger. Definitely in the form of Scrupulosity from growing up in a fundamentalist Christian church and attending a Christian school of the same nature. I like to think it has strengthened my faith, but it nearly destroyed it at one point.

    And I still go through periods where I think every bump in the road is a person. Especially when it’s dark out.

    Thank you for your voice over the years. I found you when I was trying to conceive my first child, and now I’ve been blessed with two biological children, and have been a foster mom to 4 children over the past 2.5 years.

    I wish PANDAS and OCD and depression weren’t a part of my life at all. But I have to remind myself I’m really doing okay. And it does make me more empathetic towards others . . .Unfortunately my 2 year old son has had recurrent strep infections for the past 5 months, and is having some sleep disturbances now. I love him so much, and I hope we can keep anything crazy from developing. He’s such a happy child, and otherwise so healthy.

    I guess this is just an update from another 20 something with PANDAS. And a thank you, too ♡

    Melody

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    1. Wow, thank you for sharing this. It must have been terrible dealing with this when you were only 6! It’s reassuring to hear I’m not the only one who struggled with faith after all of this… And thanks for your support over the years. I’m so happy that you’ve been able to have two biological children as well as be a foster mom. That’s fantastic. I really hope your son doesn’t end up developing full-blown PANS. 😦 Thanks for the update!

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  4. Thank you and bless you! You are giving me a glimpse into the hellish world my daughter has lived in for the past 5 years intensely and somewhat as a child whose body was wracked with strep, pneumonia, chronic ear and bladder infections while her body’s immune system went awry wreaking havoc in her brain. It’s a great relief to have a diagnosis but more than that – hope from people like you who have recovered and are free and to see slow improvement in my 32 year old daughter. Thank you for your wisdom, your courage and your strength. May you be blessed with continued freedom, health, wholeness and healing.

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