How OCD stigmas delayed my recovery process

I was frequently ill as a child; colds, flus, and several kidney infections plagued my youth. And like many kids, there were also times when I faked stomach bugs just to stay home during difficult school weeks. Whether my sickness was real or fake, I often audibly groaned in discomfort. After one particularly bad kidney infection, I was given a long course of antibiotics and had no health problems for months — but the groaning noises remained,

I’d gotten so used to making those sounds that groaning became a habit, a reluctant yet deliberate ritual, an addiction. I didn’t realize it back then, but this was because I had obsessive compulsive disorder (OCD). Groaning randomly was the first compulsion I remember developing, and it also led to the first time I was shamed for a compulsion.

I was sitting with my family watching TV and began groaning. I’d had this habit for a while now, and my parents had already asked me several times if I felt sick. My answer was always no.

My father snapped at me, his voice filled with irritation, shame, and impatience. I shrugged and left the room. I didn’t exactly lie to him — I didn’t know what caused the noises. The habit scared me, but knowing my parents thought I was strange scared me more. What if people think I’m a freak? I thought to myself as I cried in my room. I didn’t like groaning; there was just a part of me that forced me to do it.

Something else I didn’t realize at the time: I was not alone with my OCD.

2.3% of the global population have OCD. That’s over 2.2 million Americans and over 740,000 Brits who are living with the disorder.

I’d never heard of exposure therapy or cognitive-behavioral therapy (CBT) at the time, nor did I feel like it was even possible to learn how to stop groaning — so I felt like there was nothing I could do.

I remember once making fun of my friend in class for how she whistled to herself out of tune. “At least I don’t sit there groaning to myself,” she replied, making my heart sink with shame.

It wasn’t just my family who noticed. Everyone knew, everyone was listening.

“And why do you kick your leg up when you walk?” My classmate had apparently noticed I’d learned new compulsions, occasionally hopping when I walked and sniffing constantly, even if I didn’t have a runny nose. (I also refused to touch anything remotely dusty and had to say “goodbye” to my Play-Doh when I put it back in my cubby.)

Maybe I answered her question with “I don’t know,” or maybe I left the classroom because that’s the only way I knew how to deal with the situation. Leaving and pretending it wasn’t happening.

***

Back at home, my parents were still focused on my groaning. Finally, my mother interrupted me mid-groan and said, “If you don’t stop that, we’re sending you to a specialist!” I ran to my room — a specialist? It sounded terrifying, whatever it was. Her words sent horrible visions of tests, locked doors, and needles into my head

I felt so alone. I felt hated. Like the world was trying to convince me that I was embarrassing and disgusting.

The intrusive thoughts soon followed: “If you don’t get to the bus stop before the lights change, then you’ll die soon,” “If I say I want to be immortal 100 times, then it might happen.”

Ironically, the more I was mocked and stigmatized, the worse my symptoms seemed to get.

I eventually developed so many new rituals and compulsions that the old ones began to vanish. The groaning was slowly replaced by coughing, the coughing replaced by repeating certain words over and over, then a new word, then a new word, and so on. My compulsions were no longer as loud and obvious, so my parents didn’t utter the word “specialist” again.

One night years later, my family and I once again sat in front of the TV. A documentary came on that talked about people who wouldn’t throw anything away, children who had to pack their school lunches perfectly or they couldn’t eat them, mothers who couldn’t even touch their babies because they feared germs. Then I heard the term: OCD. My heart broke as I realized I shared so many qualities with the people on screen.

One featured little girl said something that has been burned into my memory:

“I’m scared that if I don’t do what it asks, then the OCD is gonna get me.” She pushed her hands out towards the camera like a monster reaching for its victim.

She saw the OCD as a monster stuck inside of her body. My problem had a name, OCD — and it was stuck inside of my body, too.

Eventually, I had to leave the room. For one, the documentary was upsetting to me — but my family also mocked the people on screen: “It’s not hard to clean your room, Jesus Christ,” “They’re just looking for attention,” “They’re lazy,” “Why can’t they just not do the rituals? Nothing’s going to happen if they stop,” “It’s all in their heads.”

These words and my “bizarre” symptoms made me terrified at the thought of telling anyone I had OCD until I was in my late teens — and even then, I only told my pen-pal and my boyfriend, feeling a deep discomfort as I spoke the words.

I wouldn’t consider myself to have been heavily bullied for my OCD as others have been, but the stigma has definitely stayed with me — and I’m not the only one who feels that way. Research shows that kids with OCD are three times more likely to be bullied than other children, and kids with mental health issues in general are more likely to experience bullying. So we know that bullying is common, and we know that bullying can lead to even more mental health issues growing up.

If I hadn’t been mocked for my symptoms, I wouldn’t have feared them for so long.

I wouldn’t have put off so many things because I panicked that my OCD would “get me in trouble” or “get in the way.” I wouldn’t have blamed myself for something that is out of my control. That’s why I’m still afraid for young people today; mental health stigma is still rampant in schools and into adulthood.

I don’t think of my OCD as “curable” — it’s not the flu or a cold. But I have decided that “recovery,” for me, was the day when I stopped being afraid of my OCD, when I began undergoing cognitive-behavioral therapy. I have recovered from my groaning compulsion, even if countless compulsions replaced it. I can now talk about the disorder casually. That will never rid me of every compulsion, ritual, or dark thought — but I’ve accepted that.

This is a form of recovery that I wish for anyone reading this while grappling with fear of their disorder. I want you to know that it’s not your fault, you are not weird, you can handle this, and it will get easier.

As I’ve gotten older and learned to deal with the stigma, I’ve realized that my OCD isn’t the real monster; it’s just something that means I have to do things differently from other people. It’s stressful, but I’ve realized that the real monster is stigma. Stigma is what taught me to be afraid, to hate myself and my symptoms.

And the scariest thing is that stigma is still alive and well, so let’s try and slay that dragon.

By May Koiner