Obsessive Compulsive Disorder, You’re Actually Not “So OCD.” What OCD Really Is.

This post was written by Obsessively Anxious. They graciously gave their permission to repost this excellent, thoughtful, thorough overview of what OCD is and is not. A must read for anyone seeking understanding about this misunderstood disorder.

The Obsessively Anxious

I’ve learned a (comparative) tremendous amount about Obsessive Compulsive Disorder since my diagnosis, which was roughly 2 years ago. I’ve learned the most information in the last 6 months from research and self discovery.

Most of the information I know, was gathered on my own, due to the professionals I’ve encountered not being adequately educated, trained, and/or experienced with OCD. That’s been the hardest part, truth be told. Figuring this out on my own, because everyone of my mental health professionals until very recently, really botched things up.

Learning what I have, has made me realize how ignorant the masses are. That includes many others than suffer with OCD, who may not realize it because of inadequately trained professionals.

I had symptoms of Scrupulosity (Religious OCD) when I was a teenager in the late 90’s. Had a properly trained mental health care professional recognized the symptoms, or had there been…

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Encouraging Carley

“Somedays we’re encouraging Carley. Somedays we are Carley. There’s a strength in vulnerability that has no substitute or equal. Gosh, I really hate it when that vulnerability overwhelms me, but I highly recommend it.”

“Love to you, Carley” (not her real name).

“You’ve got this.”

“I believe in you. You can do this.”

“ERP is tough, but you are tougher.” The messages poured in as tears coursed down Carley’s face.

The OCD conference I attended was virtual this year, and I wondered if the experience, the closeness, could be the same when we are separated by miles, by screens. And yet, if we had all been sitting in a meeting room instead, only the people next to her could have leaned over and said something kind. In the virtual room, though, people from all over mobilized and recognized her haunted look. It was recognizable because they’d seen it on the faces of their children, brothers, sisters, and maybe in the mirror.

OCD has sharp talons, and it was having a go at Carley.

“It’s been a really hard year,” she typed out as more encouragement popped up in the chat box.

It sure has. It has brought out some deep divisions as well but look how humanity can circle around someone who is hurting. That’s reality too.

One aspect I’ve thought of since that conference is this: Carley could have turned off her camera and hid her tears, but she didn’t. I consider this an act of courage. Perhaps she needed a chance to let those feelings show, and God knows, we all need an opportunity to practice caring.

To be honest, my own vulnerability can make me downright angry. My husband, another writer, can attest to this. I was halfway through writing my memoir about living with my daughter’s and my own struggle with Harm OCD, when I walked into the kitchen one morning and said to him, “Why do you get to write fiction while I have to write about OCD? Why do you get to keep all your armor on, while I have to walk around naked?”

He looked up from the pan of eggs, turned to me with spatula in hand and said, “What?”

The half confused, half should-I-be-prepared-to-defend-myself-look on his face let me know that I should elaborate. “Well, you know. When I was writing fiction, it wasn’t so personal. This book makes me feel exposed, and I don’t like it.”

“Oh, yeah.” He nodded. “I get it. It’s important though. Somebody needs to hear it.”

And he’s right. Sometimes my emotions get the better of me, though, and I do cry. It isn’t an act of bravery but something that sneaks up on me, blindsides me. I was at the Atlanta Writers Conference last weekend when a friend asked me what my book was about. I explained Harm OCD and how horrible it was to feel that for the very first time since becoming a mother, I had been afraid that I couldn’t help my daughter. Tears assaulted me to the point that I had to stop speaking.

Damn it!

But here’s the thing about that conversation: someone else now understands Harm OCD. We had a really great talk about mental health, and I didn’t have to explain to another mama what it was like to feel helpless when trying to help your child. OCD or not, mamas tend to “get it.” She talked about being able to relate to that feeling. Somedays we’re encouraging Carley. Somedays we are Carley.

I’ve said it before, but it always bears repeating—there’s a strength in vulnerability that has no substitute or equal.

Gosh, I really hate it when that vulnerability overwhelms me, but I highly recommend it.

Echoes of Traumas Past

“Then one day, the echo of sobs from months long past bounces back. We hear the sorrow, grief, loss, and pain, and it’s almost too much to revisit. My God, what do we do with this wayward emotion we thought long gone?

If this is your first visit to my blog, welcome and let me explain its focus. Harm OCD is a form of obsessive-compulsive disorder where one has a recurrent fear that they might harm themselves or others. These are not bad, violent, or crazy people. These are just people who have a door stuck open inside their brains, and the same thought keeps walking through on a terrifying loop. Unfortunately, willpower or logic won’t fix it; you need to find an experienced therapist.

It’s been about 9 months since my teenage daughter experienced a Harm OCD break down—the kind where I find her on the floor, curled into a ball, shaking, crying, telling me the images in her head won’t stop. Nine months since a serious bout of Harm OCD has wrapped its dark embrace around her and tried to suck the joy out of every moment, whisper in her ear and tell her the images she sees in her head might be true. After much trial and error, we found a great therapist with decades of experience treating Harm OCD, and I’ve seen my daughter come back from the brink of despair. She’s able to get out more, laugh more, sleep better, and in short, enjoy her life again. Until one day…

“Today feels weird,” she says as she crosses her arms on the kitchen table and lays her head down across them.

At her words I get a panicky feeling in my stomach and try to trace it to its source: I’m nervous.

“Are you feeling okay?”

She props her chin on her arms. “Yeah, I don’t know.” She sighs.

Oh. God. My heart starts pounding. It can’t be happening again. Everybody is entitled to a bad day. She’s on the right track. Calm down.

It all comes rushing back. The years of finding her wailing, terrified. Asking me if she deserves to live despite the horrific things she imagines herself doing. Years of this sweet, compassionate, kind-hearted soul looking up at me with tear-stained cheeks, begging me to tell her she’s not a murderer. Years of knowing a mother’s love, as powerful a force as it is, cannot get inside her skull and fix this. I tell myself the same thing I’ve told her many times. Breathe—everything is going to be okay.

“Hmm, yeah,” I say. “We all have days like that sometimes. I was feeling a little meh earlier too.”

 It’s a fine line, really. No one wants to be dismissive of someone in therapy. At the same time, if we launch into our fears—Should we call your therapist? What kind of thoughts are you having? I thought you were okay?—we may place a burden on someone to start caretaking our feelings. God knows a person with OCD, especially an empathetic soul like my daughter, has a keen eye for other people’s feelings.

She yawns, gets up, walks into the kitchen, and makes a bowl of soup. Life.

Breathe. Everything is going to be okay.

And it is. She’s still moving forward. It was just a tough day, and it did pass. But I realize what a mark OCD leaves on us. As it’s happening, we are so busy putting one foot in front of the other, coping, surviving, there’s no time to stop and process. Then one day, the echo of sobs from months long past bounces back. We hear the sorrow, grief, loss, and pain, and it’s almost too much to revisit. It squeezes our chest and demands our attention. My God, what do we do with this wayward emotion we thought long gone?

The OCD Walk Georgia is coming up, and we’ve been asked to think about why we will walk. There are so many ways to answer this question, but one answer is, I walk because even when I think this battle is over, it ain’t over. I don’t know that one is ever cured of OCD. We learn to manage it. I walk because somewhere someone is looking for the answers that I was when I found my daughter sobbing and asking me if she deserved to live. They are still looking for the answers that I was when Harm OCD hit me at the age of 13, and I had no idea what it was either. I walk because there’s still research to be done, education needed.

 I walk because an ungrieved trauma needs somewhere to go.

Confrontation vs. Conversation

“Ask anyone who has stood up for what they believe in, OCD or not. Most valiant moments start out with the hero about to vomit.”

My daughter has come a long way from the dark days of lying on the floor sobbing while deep in the throes of OCD’s demanding embrace, and so have I. At different times in our lives, we both managed to slip free from the bonds of scrupulous obedience, which promises assurance but delivers none. We’ve learned strategies, gained perspective, climbed the hill, and vowed to share what we’ve learned. So now that I have all this information and, at least to my thinking, moral responsibility to speak up, what will I do with it? When I’m confronted with misguided individuals using OCD to land a joke or sell a product, how will I respond? I should educate and inform. Spread the word, right?

Well, dear friends, take it from me, the Universe is listening. No less than 24 hours after asking myself this grand question, I visit a street fair and look up to see a vendor with a giant banner that reads “OCD Fashions for You.” Well, bless my crusading soul. I wanted to know what I’d do in such a situation, and the Universe said, “Wish granted. Have at it, Slick! Let’s see what ya do with this.” The Universe snickered, grabbed a glass of lemonade—it was a hot July day in the Deep South and the Universe had sweat running down its back like an OCD sufferer filled with righteous indignation and ready to make a point—no wait that was me. At any rate, the Universe sat back to watch me mumble and stumble my way through this lesson in practicing what I preach. After all, my last blogpost was about the annoyance of watching someone take a disorder that has stolen countless hours, years, and lives from its victims and reduce it to a cliché to market hand sanitizer. I’m ready. Nerves be damned. This is happening.

We know that declaration sounds brave in theory, but in practice it feels like a pounding heart, shaking hands, and a churning stomach. Ask anyone who has stood up for what they believe in, OCD or not. Most valiant moments start out with the hero about to vomit.

But then I notice…the vendor is a sweet-looking individual with an innocent smile.

“Hey, how’s it going?” she asks.

“I’m good, thanks. These skirts are absolutely lovely. The colors are so vibrant.” I feel oddly calm. I don’t want to go to war with anyone. I’d rather simply connect.

“Thank you! I made all of them. Each one is unique.”

“Well, they’re fantastic.”

“Thank you.”

Even as I gear up to ask her what I really want to know, there are no nerves and no defensiveness. I realize something about her that is so easy to forget in a world where we seldom meet face-to-face anymore. She likely needs and wants the same thing most of us do: connection, understanding.

“What does the OCD stand for in the name of your business?”

“Oh, when I make these skirts, I have to have each one just right or it drives me absolutely crazy. I have to take them apart and redo them until they are right, but I feel like I can’t stop making them either. So, I thought, why not just call it OCD Fashions for You?”

Not what I would have chosen, but this is a dialogue about mental health. Not an argument. Keep it open. “Okay, yeah, my daughter and I suffer from OCD, and I also write about it, and so your banner just caught my eye. Does it bother you, too, when people who don’t have OCD or don’t really understand what OCD is use it to sell things, or like when someone says they have OCD just because they like things neat? They aren’t panicking because it isn’t neat. Yet they tell people, ‘Oh, I’m so OCD’ or ‘You’re so OCD.’ Does that frustrate you?”

“Yeah, I doubt they’re waking up in the middle of the night to fix something.” I look into her eyes, searching for that same fright I’ve seen in the mirror after a night of checking the front door over and over again until I’m breaking out in a cold sweat as I did many years ago. I search them for the same helpless terror I detected in my daughter’s eyes that brought me to my knees, begging God and the internet for help, combing the library shelves and insurance databases before finding the right therapist for her. Did I see this same horror in this woman’s eyes? Truthfully, I’m not sure.

The lady really was a sweet soul, and we had a lovely conversation. I got a new skirt. Though I still don’t know whether she has OCD, I’m not a health professional, and it isn’t my place to judge. And yes, personally I would feel better if she would name her business something else. After all, I haven’t heard of Cancer Creations or Parkinson’s Pastries because that’s wildly offensive, yet it’s somehow okay to use OCD in this way. One thing I do know for sure is that very few people ever change, for the better at least, with scorching accusations and ego-driven diatribes, but connection-driven dialogue from one human being to another can work wonders. Planting seeds that bloom later is a very real phenomenon.

And speaking for myself, I learned exactly what I would do when faced with a situation where I needed to stand up for what I believe in. I’m happy to report that the Universe is full of opportunity to grow and connect, to trade in ego for our better angels of understanding and compassion. I’m happy to say that when we think we are looking for confrontation, what we are often seeking is simply connection. But I’m most happy to report that…

The Universe is listening.

Our Struggle Is Not Your Cliché

If the palms of the hands told the future, as some believed, then her present was written for all to see, painful, burning obsession, not content to be contained inside her mind, but making its presence known for the world to see, slashing its way across her skin.”

Recently, other members of the OCD community and I have called out several retailers that have marketed hand sanitizers as “OCD survival kits.” Why did that labeling hit us like a slap, a bucket of cold water, but most of all like trying to put lotion on hands that are bleeding from the chronic hand washing brought on by obsessive compulsive disorder? It is a massive misconception that OCD only has to do with cleanliness. For the sake of this blog post, we are talking about the torment of obsessive handwashing, but as I’ve written about previously, there are many types of OCD: harm, checking, scrupulosity, morality, and the list goes on.

I realize that some misguided marketing hire might not understand what they are doing when slapping “OCD survival kit” on a package in a clichéd attempt to sell hand sanitizer. Because knowledge is power, let me explain why this is so hurtful by citing a real-life example. Many years ago, my third grader came home from school with hands that were cracked and bleeding. For weeks, I had noticed them getting progressively drier, redder, until one day…

My daughter walked into the living room, pulled her backpack from her shoulders, and I noticed the jagged, red lines that scored her hands. If the palms of the hands told the future, as some believed, then her present was written for all to see, painful, burning obsession, not content to be contained inside her mind, but making its presence known for the world to see, slashing its way across her skin.

Tears sprang to my eyes as I noticed the bright red through the cracks, blood not yet pouring from the lines but visible in each one. I swallowed hard, not wanting her to hear the panic in my voice. “Stop using so much soap,” I pleaded.

“At school, they tell us germs are everywhere. Besides, I like the foamy stuff.”

“But you’re tearing your hands up.”

“Yeah, they sting.”

I grabbed a bottle of lotion from the counter, squeezed a generous amount in my palm, and proceeded to rub her hands with it. Tears gathered in her eyes.

“Stop! That burns.” She yanked her hands away.

“But it’s going to get worse if we don’t do something. Sweetie, you have to stop washing them so much.”

“I’ve already told you. I can’t.”

“Why?”

“I just can’t.”

My daughter is now nineteen years old, and it has taken years of therapy to get the hand washing, among the many other forms of OCD she wrestles with, under control.

She has never been a neat freak. Her room is messy. Her bathroom is even worse, and that sink that she scrubs her hands in until they bleed, sports dried toothpaste and hair clippings mingling with old soap residue—not at all the fastidious image that comes to mind when many people think of OCD. And while we are at it, it is neither cute nor funny to tell your friends that they are “so OCD” because they like to have things neat. OCD is a serious neurological disorder. If your friend is in the floor crying, panicking, and considering ending their life because they can’t get their sock drawer arranged just right, then yes, they might have OCD, but even then, it would be worth a serious talk with your friend about finding a skilled therapist, not firing off a flippant comment meant to shame and tease. Despite what many may conclude, OCD is not simply a disorder for people who get annoyed if things aren’t tidy. While there is a spectrum to OCD like most things in life, if you can walk away from it without panic, or at least extreme discomfort, then it likely isn’t a disorder.

In short, using OCD to market hand sanitizer is insulting at best, enabling and dangerous at worst, and retailers should not have to be asked repeatedly to remove this wording from products and advertising. A company that cares would understand that words matter and listen the first time.

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