What People Living With OCD Wish You Knew About Them

It is not uncommon to hear someone flippantly use the phrase “You’re so OCD” to someone who is well-organized or meticulous about hygiene. But Obsessive Compulsive Disorder, more widely known as OCD, is a serious mental health issue that occurs when the someone gets caught in a debilitating cycle of obsessive thoughts and compulsive (largely uncontrollable) behaviors. An estimated 1 in 40 American adults are diagnosed with OCD, and roughly 50 percent of those cases are considered severe. Though most people are relatively familiar with OCD, the mental illness still heavily stigmatized and misunderstood. These five people spoke with Bustle about what they wish others knew about living with OCD, and why the condition is never a joke.

“We can all work towards destigmatizing OCD by taking just a little time to educate ourselves and dispel the myths surrounding it. OCD is not an uncommon disorder, but the lack of general awareness and understanding of it is appalling,” Emily Forbes, a mental health advocate who has lived with severe OCD her entire life, tells Bustle. “The less people with OCD have their suffering trivialized by ignorant jokes, the more likely they are to open up and, theoretically, do the destigmatizing for society by talking about how it really is.”

OCD is often presented as a catch-all way to describe any obsessive cleaning or organizing. However, the symptoms of OCD go well beyond these stereotypes, and are extremely debilitating for many people who live with this mental health issue. According to the National Institute of Mental Health, people with OCD can experience “obsessions” that manifest in the form of disturbing, unwanted, or aggressive intrusive thoughts that are persistent, phobias, and an intense need for symmetry or perfection. Compulsions are behaviors such as excessive cleaning, handwashing, organizing, and counting, as well as repeatedly checking on things.

Though OCD was once listed as an anxiety disorder, the most recent DSM-5 now lists the mental health disorder in its own category — along with similar disorders such as body dysmorphic disorder (BDD), trichotillomania (hair-pulling), and dermatillomania (skin-picking). Moreover, the World Health Organization (WHO) lists OCD as one of the top twenty leading causes of disability worldwide. Despite how relatively common OCD is, the mental illness is routinely stigmatized, joked about, and obscured by misinformation.

Tazia Cira, an artist and activist who has lived with OCD for over a decade, tells Bustle they believe “the most damaging stigma that exists for people with OCD is the fact that so many people without OCD believe it to be ‘one-dimensional’ and ‘quirky.’” Cira says the disorder has been “co-opted, erased and monetized upon,” explaining that with a simple internet search, you can find hundreds of shirts with phrases like “Obsessive Christmas Disorder” that minimize the severity of OCD.

Dr. Jonathan Abramowitz, a clinical psychologist who specializes in OCD and anxiety disorders, believes stigma can also prevent some people with OCD from receiving proper mental health care. “For many people, it's still considered a sign of weakness to have a psychological problem, which leads them to deny it and to not seek help,” he says. According to the Association for Psychological Science, around 40 percent of people with a serious mental illness do not receive medical care.

While people unfamiliar with OCD typically define it by compulsive behaviors, many people with OCD do not even experience outward symptoms. “OCD comes in many ‘flavors,’ and for many sufferers, you would never know that they have OCD — they suffer silently because the symptoms are all in their mind,” says Dr. Abramowitz.

Mirror, whose name has been changed to protect her privacy, tells Bustle, “The variety of OCD I live with is something patients call ‘Pure O,’ which stands for Purely Obsessional. I do have compulsions, but intrusive thoughts and obsessions are the most intense part for me.” The artist says it took her 24 years to be correctly diagnosed with OCD due to the pervasive trope that the mental health disorder is “strictly about fear of germs,” and “a need to keep things orderly.”

Unfortunately, Mirror is not alone: People with OCD are often misdiagnosed with depression or anxiety because they are too ashamed to share their intrusive thoughts with mental health professionals — or, simply because their symptoms are dismissed. A college student and administrative assistant, who requested to remain anonymous to protect her privacy, explains to Bustle her parents used to say her OCD diagnosis was an excuse for “daydreaming” all the time. “[My parents] failed to realize that my obsessions are my brain’s way of avoiding my anxiety,” she says. “They would hound me to focus, but, that would only add to the stress that was causing me to dissociate and obsess. So, I’d end up super frazzled, with a million thoughts I couldn’t ignore or figure out.”

Many people with OCD have turned to social media and apps to support others with the disorder, raise awareness about OCD, and help dispel myths about the mental illness. Jade Moore, the owner of Ivy + Stone Cake Design, not only shares not her beautiful baked creations with her 230,000 followers, but uses her Instagram page to speak honestly about living with OCD and anxiety. “The way I look at it is that I have been blessed with a large following so I must use it wisely. It’s no coincidence that I have mental health issues, and a platform to talk about it,” says Moore. “Being a part of a group of like-minded people, who understand exactly what you are thinking and know what you feel is honestly life changing. Unless you have mental health issues yourself, you can never truly understand the extent of the thoughts that go on in our minds.”

Forbes warns that online support groups “can do more harm than good” for some people with the mental illness. “Unmoderated groups of people sharing what their obsessions and compulsions are can be so triggering for an OCD sufferer,” she says. Cira also expresses their experience in online mental health communities has not always been positive, because many people are “apathetic” towards those with OCD. Luckily, online therapeutic resources are becoming more thoughtful of people with OCD, and geared towards them. There is even an app designed by mental health professionals and OCD sufferers — called nOCD — that allows users to track their individual OCD symptoms by customizing the app, access to peer support groups, and provides them with mental health exercises.

Though our society has made strides towards being more understanding of mental health issues, there is a long way to go. But, the key to destigmatization may be as simple as education, creating a dialogue about mental health, and unlearning ableist behavior and language. “I think just having an open conversation about it with friends and family to start is so important,” says Moore. “The more people speak, the more people are aware and can start to understand the complexities of those who suffer with OCD/mental health issues.” She also encourages people who live with OCD not to be afraid of their mental illness and to seek out therapy, adding “Find power in your diagnosis. Having a name to my illness was one of the most relieving feelings in the world.”

Like every other mental health disorder or physical illness, OCD should be treated with compassion, and like a serious illness — because it is. OCD affects millions of people worldwide, and those who live with it deserve respect. So, next time you hear a friend or family member jokingly say “I’m so OCD,” it’s time to speak up.