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What OCD Feels Like

October 18, 2024 

When I tell people I have Obsessive Compulsive Disorder, their eyes usually gravitate to my hands.

But instead of chaffed skin and meticulously trimmed nails atop beds scrubbed to gleaming or other signs of compulsive handwashing, they find a set of well-used paws crowned with nails of varying lengths with bits of my garden embedded underneath them—and by “bits,” I primarily mean dirt.

So how is it that a woman who has lived with moderate to severe undiagnosed OCD for more than four decades goes through her days with dirt under her fingernails?

It just so happens that the hand-washing kind of crazy isn’t my schtick. Yes, I used the word “crazy” in reference to a mental illness I suffer from. That’s because I realize that to someone who hasn’t experienced the relentless control OCD exerts over its sufferers, what it demands of us is flat-out, batshit, WTF crazy.

Like a sadistic, controlling boss, OCD is constantly monitoring us, demanding us to perform increasingly complex tasks. If these tasks aren’t completed perfectly, she’ll make us start all over and over and over again. This goes on every hour of the day, and even all through the night, until we get it right. So why don’t we tell OCD to take this job and shove it? Because OCD promises its underlings an impossible to refuse payout: to keep bad things from happening to us, our loved ones and even the world at large.

Like I said, crazy.

Those of us living with OCD may not know why having the pillows perfectly arranged or the countertops streak free will keep our loved ones safe; in fact, it took me decades to even realize the connection between childhood trauma and my need to have my surroundings “just right.” I can’t control the ugly, pervasive pain that has been with me since my big brother ended his life when I was 12. But I can make things pretty. I can make my life look picture-perfect.

But even once we realize the flawed thinking behind fending off loss and death with a bottle of Windex (which, by the way, would make an excellent slogan for the cleaner), we sure as hell don’t want to explain it to someone else.

If I don’t tell someone that I have OCD, they won’t know it. Because, like the majority of the estimated 3 million adults in the U.S. who live with this disorder, my battle with it is invisible.

We feed the beast when we are alone, away from questioning eyes. My rituals of cleaning, arranging and overplanning result in a showplace home and awesome school parties for my daughters. That’s what people see. Not that I stayed up half the night before a dinner party organizing the storage closet to look like a perfect family lives in our home (on the off chance that a guest will want to partake in the odd tradition of arriving at someone’s house and going on “the tour”).

As I arrange the boxes of school papers by year, I imagine the judgement if anyone notices there is no box labeled 2014: “I guess she wasn’t much of a mom in 2014. Does a Mom who takes a year off from caring about her children really deserve them? Her daughters will be lucky to survive their teen years without a truly loving parent.” Of course, no one looking at our storage closet would come anywhere close to condemning me that way—but I do it to myself every day.

My home looks the way it does, and my daughters’ lives are full of manic love and attention, because in my mind, children who are cared for in every possible way a mother can imagine are “safe.” OCD tells me that if I do everything perfectly for my children, they won’t die—that’s my kind of crazy. You see, like many mental health disorders, OCD is likely rooted in and/or triggered by trauma. My big brother, my only sibling, was 15 when he came into my room to say goodbye before heading up the hillside behind our house with one of our dad’s hunting rifles.

Although I was likely predisposed to OCD and already showing some signs of it (like straightening up my parents’ room before people came over), that January morning 40 years ago, OCD moved in for good. Thus began the cleaning and arranging rituals that I would strictly adhere to throughout my life to keep from losing my loved ones the way I lost my brother.

Officially, my type of OCD has a very unofficial sounding name: “Just Right” OCD. I look at the world as perpetually askew. And so I spend my days making my daughters’ lives “just right.” In the primitive part of my brain where OCD has made itself comfortable (I gave it the Netflix password long ago), I think that disappointment is deadly.

Dry ice didn’t make enough bubbling smoke in the Halloween punch? That’s one strike against a happy childhood. My youngest daughter is stranded at basketball practice because I was babysitting for a sick friend? That’s another strike. I forgot to put an encouraging note on the napkin in my oldest daughter’s lunch? Another strike. Is it three strikes that will bring my daughters to the conclusion that life isn’t worth living? Or do I get four? Maybe it’s only two. I will have to be more careful, more diligent. I have to be on higher alert.  

When my malfunctioning mind detects a flaw in my parenting, my body has a full-blown fight-or-flight response. My pulse rises to a throbbing in my head and chest. My breathing stops. Lightening crackles through my veins. All the while, my brain screams, “DO SOMETHING RIGHT NOW BEFORE IT IS TOO LATE!”

So I run down the hall to fix the dry ice or turbo dial everyone in the school directory to get my daughter a ride home or race to the school to get that napkin in my older daughter’s lunch—like their lives depend on it. 

When my daughters hit their teen years, OCD took over every part of my brain, and I became so desperate to keep them from my brother’s fate that I cleaned the walls down to the sheetrock. 

I’m not saying that Mark killed himself because we grew up in an unhappy, dirty home—it was actually full of joy, homemade jam, needlepoint pictures and bedtime stories. Mom did spring and fall cleaning with the fervor taught in her Ladies Extension Homemakers Club and was praised for her child-rearing skills in an article in the local newspaper. My brother and I spent our childhood splashing in the pool and exploring the foothills that were our backyard.  

OCD doesn’t make sense, but I’ll try to expose it anyway—because that’s the beginning of dethroning this tyrant who has ruled over me for decades.

I was the last person to see my brother alive and, as a result, I still struggle to forgive myself for not doing something to save him. Now, I’m hell-bent on doing everything in my power to “save” my daughters from Mark’s fate.

I even promise beyond my power, like assuring there would be snow for my daughter’s snow-themed sixth birthday party. After weeks of obsessively monitoring the weather for the January party date and seriously considering sacrificing the family cat to Ullr, the snow god, I ended up ordering a massive quantity of instant snow (the Florida company said it was their first time shipping to Colorado). No matter how outlandish, seemingly unrelated and, yes, downright crazy the ask, I will do it to keep my daughters safe.

So far, OCD probably doesn’t sound that bad. I mean, a lot of moms go to great lengths for their children to have a happy childhood, right? True, but their brains don’t have a groove worn in them from endlessly going over the same thoughts. They don’t spend every possible minute dissecting every possible detail of how to create the perfect childhood. And most moms don’t think their children are going to die if they don’t get everything “just right.”

Give me an “O”

For those of us with OCD, an “obsession” does not refer to the way we feel about a new beauty brand or the latest Starbucks beverage or even the cute guy in math class. First of all, people usually enjoy thinking about such things. OCD thoughts, on the other hand, are intrusive, uber unpleasant and more difficult to get rid of than the lyrics to an annoying pop song playing on loop in your head.

“One or both of my daughters won’t survive the teen years.”

“I don’t know where my daughter is. She is in danger.”

“My daughter is about to die, unless I do something to intervene.”

Oh, but there is something you can do, says the little red devil in the primitive part of my brain (think of one of those mini-monsters that drug commercials use to portray a medical condition such as dry eye).

OCD: “To begin with, you can sweep up that Cheerio that just dropped on the floor.”  

Rational Me: “Um…really, because that doesn’t seem related to the situation…”

OCD: “Do you want to pick up that Cheerio, or would you rather pick out what dress your daughter will wear in her casket?!”

Primitive and rational me runs to get the broom, then spends 90 minutes not just sweeping up the Cheerio, but cleaning the entire kitchen floor, including underneath all the appliances.

OCD: “You missed a spot.”

Give me a “C”

OCD tells me, in no uncertain terms, the rituals I must go through to provide the picture-perfect home that will keep my children safe. In OCD speak, we use the word “compulsions,” defined as “the action or state of being forced to do something,” because we are truly being forced. It’s not like we actually enjoy being put through the paces.

Every morning for  the past 40 years, I’ve made the rounds. I go into every room of my house and every corner of my yard and make sure everything is “just right.” And by “just right,” I mean perfect.

Yes, I’m the one who defines perfect: rugs at 90-degree angles, no dead leaves on the houseplants, no cat hair on the couch, pillows symmetrically arranged… on and on for about an hour.  Mornings at my house are like the moments before the big reveal of a renovation on HGTV.

People often try to normalize mental health issues to make the sufferer feel better. All my life people have commented, “You just like your house clean” or “Oh, your house is always ready for when people stop by.” That’s nice of them, but the person dealing with OCD thinks, “If this is normal, if this is the way life is supposed to feel, then I want the hell out.”  

Give me a “D”

This disorder’s control of my thought patterns went on undetected by professionals, family members, loved ones and even myself for 40 years. In recovery speak, I was a “functioning addict,” hooked not on booze or pills (which never gave me the relief my anxious brain sought), but to my compulsions for perfection.

I got up earlier than those around me and stayed up later. I would use my lunch break to go home and make sure everything was in order. I would forever worry that something was wrong and that it was wrong because of something I had done or had failed to do. I wished away nearly every day of my life so that I could go to bed knowing it had turned out OK. Then I would start worrying about the next day.

But then someone who has lived with this monster himself saw my struggle. Actually, Kai heard it in my voice before we ever met in person. 

While working with a psychologist has been crucial for coping with the grief and general anxiety stemming from my childhood trauma, it was only through long conversations with someone else who has experienced the special hell of this nuanced disorder that I could begin to rewire my malfunctioning brain.

At first, I was skeptical that my cleaning and arranging were beyond what any suburban Mom does. But on a rainy spring afternoon in 2021, I had my “aha moment” in the pharmacy parking lot. I had just picked up one of the three prescriptions I take for anxiety. While on the phone with Kai giving him my back story, I was surprised to hear myself saying, “I don’t want to live like this anymore.”

When he responded, “You don’t have to,” I was again surprised, this time by tears of relief. Thus began my eviction of OCD.

Once we know that what our minds are asking us to do makes absolutely no sense, the continual drive to do it becomes exponentially more frustrating. Getting your mind “off” of OCD requires putting everything you’ve got into the fight. The reward is a new life with a lot less anxiety and a lot more free time.

For the treatment known as “Exposure Response Prevention,” or ERP, you have to think of your greatest fear and face it. You have to think of what you most don’t want to do and do it. You have to think of what you most want to do and not do it. You have to expose yourself to what causes you anxiety and feel your typical OCD response and then prevent yourself from doing it. 

You have to start with small exposures. Start too big and your mind looks for the exit—and by that, I mean the big exit.

Let’s begin with an example involving waffles. This particular ritual evolved from something reasonable: the belief that for my oldest daughter’s overall wellbeing, she needs to eat a healthy breakfast. But after seven months of my daughter’s COVID-induced mental health crisis, the ritual further evolved into the belief that if I didn’t provide the best possible waffles I could make, she would kill herself. Seriously.

The first morning in Southern California for OCD treatment, my daughter and I were staying in a hotel room without a kitchen, so the hunt for the best waffles within walking distance was on. Julie (not her real name to protect her privacy) had found the perfect place a 40-minute walk away. In my mind, the risk of making her get up and go to a restaurant without breakfast was too high to manage. My twisted mind told me that with low blood sugar the only walk she would take was off our 10th floor balcony.  I would have totally done the 40-minute walk, but by the time I walked back, the waffles would be cold and therefore imperfect. So, I found a closer place and breathed a sigh of relief when the waffles were acceptable. She lived to see another day. Then we got a place with a kitchen, but I had to make the waffles from a mix. With each step away from the “perfect” waffle, OCD loosened its grip. By the end of the three-week trip, Julie was making herself oatmeal for breakfast, and my heart stayed in my chest every morning. 

When I got home from my intensive outpatient program with Kai, I had a whole new set of challenges: counters not to polish, crumbs not to sweep and scattered things not to return to their proper places. The tasks exponentially increased in difficulty when I was “triggered,” aka “exposed,” to a stressor such as my daughter saying that she had “nothing to look forward to” in her life. Hearing this, OCD piped in: “Well, maybe if her home looked a little neater and tidier, she would have something to live for. Where’s the Windex?”

After about two weeks of intentionally not responding to exposures, I came downstairs one morning to find the pillows all piled up on one corner of the couch. For the first time since owning a couch, I hadn’t arranged the pillows in a perfect pattern before leaving the room to go to bed—and I’d actually been able to fall asleep. For those without OCD, this doesn’t even seem worth mentioning. For me, it was a freakin’ miracle.

And guess what? When I checked on my daughters sleeping in their beds (one of many rituals I have to stop doing), their chests were still rising and falling with breath—with life. They survived in a world where the pillows were out of order. That morning, I heard a small voice, the voice of my 12-year-old self, whisper from the depths of my brain: “Your girls are going to be OK.”  And I started to let in the idea that maybe I’d be OK too. 

I am not completely “cured”; in fact, I likely never will be. But my morning rounds are much shorter now. This leaves me with more time to go out into my yard and get dirt under my nails, planting something new.