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.

Born Too Soon for Help

“For me, his kindness is not diminished by what he felt he had to do to survive. I remember a sweet old man communing with feral kindred spirits, moments of peace with feline vagabonds.”

My family and I sat in our Buick and watched as a sweet old man with snow white hair, a worn charcoal gray fedora, and dress slacks held up by bright red suspenders stumbled down the street of my small Georgia hometown. He held a liquor bottle wrapped in a brown paper sack. I had never seen him drunk before. I just remembered my grandfather as perpetually kind with a never-ending supply of circus peanuts and peppermint sticks in the pockets of his old sport coat. I was too young to understand what was going on at the time. We drove away without him ever knowing we’d seen him. My mother cried the whole way home.

His small, run down house was home to every stray cat in the neighborhood but no one else. He faithfully fed them, and they kept coming. Long divorced, with grandkids popping in occasionally, he knew more cats than people.

“Here, kitty, kitty. Poor kitty,” he would say as he sprinkled food over the ground for the feral horde. I was a little girl then, but I saw his compassion as he watched the cats pop up one by one about the same time every day, tentatively, slowly, scared. “Poor kitty.” He stooped down in well-worn dress shoes, their shine lost long ago from the dust, years, and small-town poverty, to hold out a hand to a cat at once wanting to approach but too frightened at the same time. This was long before rescues were fashionable and the good graces of people like my grandfather were where these starving cats turned for help.

Inside the house, he had stacked junk to the ceiling. I couldn’t understand why he would hold on to so much stuff and refuse to throw it away. I was even told he kept what little money he had hidden in the walls, perhaps a carried over fear from living through the Great Depression. I remember the nerves he experienced while driving. The panic he went through when he spotted a police car. He had done nothing wrong, and yet he would slow down so much that he would get pulled over for going too slow. I was told that no one could think of anything that had happened in his past to make him panic like this.

His old post office box could be identified immediately by the smudges around the lock. On many occasions, I watched him attempt to leave the post office, get halfway out, and turn around to go make sure the box was still locked. There was no handle to pull on the small door of the box and confirm it was closed, so he made many attempts to push it with his thumb to make sure it didn’t bounce back, which would have indicated it was never locked to begin with, as the demanding part of his brain warned. He’d try to leave again before being pulled back by the exhausting compulsion in his brain to check…just one more time.

As he aged and Parkinson’s disease took hold of his limbs, I remember his shaking hand pushing an item on a shelf one inch to the right and then the left, and him turning away and then back to do it again. In hindsight, the drinking, and later, a “problem with pills,” were clearly signs of a man self-medicating to escape the torment in his head.

It was over two decades later while lying in bed at 1:30 a.m. after a particularly bad night of walking back and forth to check a lock on a door over and over again that it dawned on me: “Dear, God! Pawpaw had OCD!” How in the world had I not seen it sooner? He’d been born at the turn of the last century when any mental illness was considered shameful and died long before we were all attaching #removethestigma to our posts. Well, he died long before social media for that matter. Who knows how much better his quality of life could have been with proper treatment and understanding? So, he did his best to quiet the torment raging in his brain.

For me, his kindness is not diminished by what he felt he had to do to survive. I remember a kind old man communing with feral kindred spirits, moments of peace with feline vagabonds. I only grieve the hours he lost due to the lack of proper treatment people didn’t have the access to back then.

 But today, we don’t have to struggle alone. We don’t have to self-medicate in shame and silence. Help is available.

Start today.

OCD can often lead to attempts to self medicate with drugs and or alcohol, compounding one serious problem with another. If this is a situation you find yourself in, you need a treatment center that is able to address both issues at once.

The Recovery Village is an example of such a place that has experience with treating both.  https://www.therecoveryvillage.com/mental-health/ocd/

Please feel free to visit my Resources link as well.

The Teenager With OCD: A Forgotten Victim of the Pandemic

“Don’t say it,” I whisper under my breath as Dr. Fauci imparts his sage wisdom to a captive audience. We know the drill: wear your mask, keep your distance, take your temperature, and…

“Handwashing,” he advises.

“Damn it,” I mutter, looking around the room to make sure my oldest daughter isn’t paying attention. I don’t want her to hear about the handwashing again. It isn’t just the act of handwashing that the experts stress, it’s the duration and thoroughness as well.

No, I’m not against hygiene, especially during a pandemic. My teenage daughter has Obsessive-Compulsive Disorder (OCD). Among other compulsions, she washes her hands until they crack and bleed, and the pandemic, among its myriad horrors, is hell on those suffering from OCD. OCD isn’t a cute label you slap on a friend’s urge to organize their sock drawer. It is a beast that demands reassurance, ritual, and obedience. Worse, the more reassurance you give, the more it seeks, until your heart is racing and your stomach is aching, and you are unable to cross to the other side of the room without thinking the right thought at the right time. Even if you can hold the right thought in your head, it may morph before you cross the room; then you have to go back, touch a lamp again, or read the same sentence ten times, or, as my daughter has told me, pick up an eyelash off the carpet because you were thinking about the viciousness of Nazis when you dropped it. If you don’t find it, then it means you’re a white supremacist, which is connected to Harm OCD, intrusive thoughts of hurting yourself or someone else.

My daughter’s Harm OCD can spiral until I find her dry heaving over the toilet and telling me between sobs that if the unbidden, murderous images she sees herself committing in her head are true, then she doesn’t deserve to live.  I sit on the floor with her. Sometimes presence is all we can give.

 Most of us have likely had the experience of a stray thought about harming someone, perhaps even someone we love. We shudder, shrug it off, and move on. But the person with Harm OCD cannot stop the images; the more they try to push the intrusive thoughts away, the more they persist. Their brain interprets these random flashes of nonsense as actual warnings. Dire warnings.

These are not bad people. In fact, studies have shown that those with Harm OCD may be less likely to commit violence, as the empathy and compassion within the sufferer feeds the compulsion: the very act of trying not to think of something causes the person to think about it on a punishing loop.

That’s the insidious nature of OCD. It wants to get your attention—demands it, in fact. It goes for the most vulnerable thing, the thing that would scare you the most. And it works. It works so well that it starts to take over your life. It sucks the joy from moments and crushes them. The sufferer will start to seek confirmation that they are not a horrible, unlovable, unworthy person, or that they aren’t going to accidentally kill someone by spreading COVID-19 because they didn’t wash their hands just one more time.

It can take years of therapy to learn how to stop responding and ritualizing when the thoughts and obsessions occur. I know. I have OCD as well. Now I’m on the other side of this disorder, willing to help share resources with anyone who will listen.

The pandemic has many victims, some you wouldn’t even guess. Somewhere there is an OCD sufferer who almost had their handwashing under control until the pandemic hit. Somewhere there is someone with intrusive thoughts who managed to control them until more than two million people worldwide died of COVID-19. Somewhere there is a person you would never imagine being in distress who is just barely hanging on, waking up every day to fight a beast that is threatening their sanity. Somewhere, someone needs a little more patience, a little more light and love, a little more advocacy.

We can help OCD sufferers deny the beast its power over them, to drive it back into its lair and seal the cave. The process starts by saying that their thoughts do not define them, their actions do. These actions include finding a specialist in cognitive behavior therapy—specifically exposure and response prevention (ERP). And then they must do the work. The reward is nothing less than the reclamation of their life. Just as we can beat the coronavirus with diligence, OCD sufferers can overcome their neurological disease through persistence and courage. Start today.

Vulnerability Be Thy Name

I sit at the kitchen table in another OCD discussion with my daughter. She’s in tears.

I know what to say. I’ve been through this before. I have it figured out… except, I don’t. I feel myself hesitate to share how I was feeling while I was out running today: the vulnerability that felt so icky, my urge to drown it out with some really loud, vintage Aerosmith piped in through my headphones. I realize it isn’t fair for me to expect her to be vulnerable—the only true path to healing—if I can’t do it myself. We want to ask someone else to risk exposure while we sit there in our armor, fearing that an arrow might pierce our ego.

It’s total hypocrisy. We often hide behind concepts such as “I have to be the strong one here” or “This isn’t about me.” And while those things might be true, they are often excuses for us to hide behind. We can’t ask others to do what we are too damn egocentric to do. I recall an interview with RuPaul that I listened to a couple months ago where they shred the idea that “vulnerability is strength.”

It isn’t fair for me to hold back my own fears. I’d go so far as to say that it is a betrayal to the person sitting in front of me. 

I remember the day I ran into a neighbor walking her dog and a pleasant “hello” turned into a discussion about the grief we shared as mothers dealing with children going through deep anxiety: the powerlessness, fear, and sorrow we felt as parents. I thought I was fine, coping well, chugging along, until I burst into tears on the side of the road. We both needed that talk.

Back at the kitchen table, my daughter says, “I don’t want people to pity me.”

“Me neither. It sucks, right?” I take a deep breath and begin, “Today, while I was out running, I felt…weak, powerless, and couldn’t figure out what it was. I started this blog to help others who’ve felt the horror of Harm OCD, but no sooner had I designed the site than I began to have this creeping sense of something I couldn’t identify. I wanted to ignore it. I almost did. Instead, I sat with it (well, I was running at the time, but you get it), let it wash over me without judging it.” It occurs to me that this is the essence of Exposure and Response Therapy (ERP) therapy as well. “It was a feeling of vulnerability. I asked myself what was behind that. Behind it I found fear. Fear of feeling weak again. Vulnerable. But I made myself stay with it.”

“No. I don’t like that.”

“Yeah, me neither, but I can be okay with those feelings now. I can embrace it.”

We have a long talk about how we are feeling. We don’t fix anything.

But neither are we alone.

Smiling Buddha

My teenage daughter and I come from a long line of nervous smilers, appalled smilers, and many other smile-related coping mechanisms. My Charismatic Christian grandmother even tried to pray a demon of mockery out of my sister due to her nervous giggling. Of course, that’s a whole other post, perhaps titled, “Nonsense Be Thy Name,” but I digress.

My daughter often asks me questions I can’t answer. I’m instructed not to answer by her therapist as they are reassurance-seeking questions fueled by her OCD; thus, my answers would be enabling.

They often start with, “So, I know this might be an OCD question but…”

That’s my cue. The point where I know immediately that I can listen and offer support, but I am not supposed to reassure and become part of her OCD ritual. As many who’ve suffered OCD—especially harm, morality, checking OCD and the like—know, reassurance is an abyss that can never be filled. “Are you sure I’m not a bad person? Are you sure I’m not a murderer? A weirdo? Someone who doesn’t deserve to live because I have these thoughts?” The list goes on.

“You know I can’t answer that,” I reply.

“Arr,” she moans, almost comically, as she scrunches her face and gives that little smile that helps her deal with the crushing anxiety that OCD brings. I call it the “Smiling Buddha.” It’s a wonderful counterbalance that keeps this thing from crushing her. I don’t believe Smiling Buddha is avoidance or minimizing. It is a grace. It doesn’t fix everything or banish the beast, but while the OCD beast thrashes around demanding attention, ritual, and blind obedience, Smiling Buddha tames the tyrant with a quiet, unexpected power.

We know Harm OCD is a big problem that demands big solutions, tough solutions. In fact, we feel that we are damn near broken as we implement these solutions. The ERP therapy itself is painful and demanding. There’s nothing easy about lying in the floor in absolute terror that you might be a murderer and being told to do nothing to reassure yourself. The harsh reality is pretty much what Churchill said, “If you’re going through hell keep on going.”

Here’s to the Smiling Buddha–the little graces that are so unobtrusive, modest, humble, and unassuming, that we almost overlook them. In hindsight, they are irreplaceable anchors in a stormy sea.

There is nothing weak about this bundle of fear, nerves, and sorrow I see before me seeking reassurance, this lovely soul that is my daughter. I don’t reassure. I just listen, as Smiling Buddha sits across from me, quietly accepting, unmoving in the torment that is very much still there.

Grace in the flames.

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