Did you know that, according to the ​​International OCD Foundation, 1 in 100 adults in the United States live with OCD? 

We’ve often seen OCD portrayed or referenced in entertainment (hello, Adrian Monk!) — but unfortunately these limited depictions actually stigmatize those who have OCD.

Fortunately, we each have the ability to better understand what OCD is (and isn’t) and learn how to be better allies and advocates for those with OCD.

What Actually Is OCD?

OCD is more than just a fear of germs, or turning a doorknob three times.

Everyone has intrusive thoughts, like “What if I suddenly drove off the road?” “What if this headache is actually cancer?” or “What if life is just a simulation?”

But for people with OCD, these intrusive thoughts can get stuck in an obsessive-compulsive cycle. 

What Are Obsessions and Compulsions?

Obsessions can be about anything, but mostly about things we value, like religion, family, health, our identity, or the meaning of life. 

Compulsions are actions taken to alleviate the anxiety of obsessions. Compulsions can be physical (eg. tapping, cleaning, redoing a task, etc.) or mental (eg. rumination, avoidance, thought neutralization, etc.) 

Performing mostly mental compulsions is commonly nicknamed “Pure O”. Unfortunately, it can be easy for this type of OCD to stay undetected because compulsions aren’t always noticeable. 

The Different OCD Themes

People with OCD may experience obsessions around one or more different themes, including but not limited to:

  • Contamination 
  • Health 
  • Religion/moral scrupulosity 
  • Harm 
  • Sex
  • Bodily-functions
  • Perfectionism
  • Relationships
  • Existentialism
  • Suicide

For example, a mother with “Harm OCD” might be holding her baby and have intrusive thoughts like, “What if I threw and killed my baby? What if I’m secretly a murderer? What if I tell someone my thoughts and they take my child away?” 

She might engage in compulsions such as avoiding being alone with her baby, or mentally reviewing any signs that she might be a murderer.

These thoughts can be extremely debilitating, and can quickly lead sufferers to isolate themselves as they continue to engage in compulsions to keep themselves and others “safe.”

The Harmful Consequences of Misrepresentation of OCD

The average time it takes to get diagnosed with OCD is 14-17 years, and people with OCD are ten times more likely to be suicidal. 

The misunderstanding of OCD often leaves people suffering for years in silence, afraid to seek help. They fear their thoughts are reflective of them and their reality. 

But intrusive thoughts are ego-dystonic, meaning they are opposite to a person and their character. The thoughts are so distressing because it is the exact opposite of what a person wants or would ever do. 

Proper OCD education doesn’t just clear up misconceptions, but it can also be life-saving for people who are debilitated and confused by their intrusive thoughts.

What is the Treatment for OCD?

Although OCD is chronic, it can be managed. The gold standard treatment is ERP, or Exposure and Response Prevention.

Treatment includes exposing clients to triggers (whether imaginal or in vivo depending on the content of the thought), and then sitting with the anxiety without engaging in compulsions. 

It’s important to find someone who truly understands OCD. Someone seeking therapy for OCD should make sure they interview their therapist about their training, and that they use ERP.

In some cases, medication can also help to reduce symptoms. Those with OCD should find what’s right for themselves by talking to a trained professional.

How to Make a Difference for People with OCD

Educate Yourself About OCD

Because OCD is so misrepresented, it’s easy to contribute to stigma and unknowingly make things worse for those with the condition. Reading up on symptoms and treatment can help you gain a better understanding of how to help someone.

Try to become familiar with different obsessions that go beyond contamination, perfectionism, or symmetry, and learn how compulsions can manifest so that you don’t accidentally help someone engage in them.

Obsessions and compulsions may seem scary, weird, or outlandish, but remember not to shame someone if they open up to you. It takes a lot of strength to share about your worst fears, so be as supportive as possible.

Be Mindful of How You Talk About OCD 

Try to avoid using phrases like…

“I’m so OCD!” when referring to being organized or clean. While using OCD flippantly can seem trivial, it only adds to the misrepresentation of the disorder and leaves people unaware that they suffer from it.

“You would never do [insert fear]!” or “That would never happen!” While reassurance seems to help, it only perpetuates the cycle. 

“Just stop thinking about it!” Avoidance is a compulsion. You cannot stop intrusive thoughts, but you can learn how to react differently to them. 

Build Your Empathy for People with OCD

Instead of consuming media that sensationalizes the disorder, uplift OCD advocates and professionals that accurately portray the disorder.

Consume Media That Better Represents OCD

Read books like Everything Is an Emergency by Jason Adam Katzenstein and Turtles All The Way Down by John Green.

Listen to podcasts like The OCD Stories and The New York Times’ The Daily episode: “A Special Episode for Kids: The Fear Facer”

Watch TV shows like HBO’s “Pure” which showcases someone living with Pure O and sexually intrusive thoughts.

Follow Social Media Accounts That Discuss OCD

Follow OCD advocates like @ocddoodles, @obsessivelyeverafter, @anxietyocdtreatment, and @kimberleyquinlan.

Support and Learn From Organizations like Made of Millions

The Made of Millions Foundation is an advocacy nonprofit on a mission to change how the world perceives mental health. 

Originally called intrusivethoughts.org, their website is full of educational resources for OCD. You can find pages dedicated to different themes, candid stories from community members, video interviews with OCD specialists, livestream series, stigma-fighting campaigns, and more. 

You can also donate to support their ongoing work.

Encourage Loved Ones To Find Treatment/Support for OCD

Finding treatment for OCD can be difficult. It’s common for specialists to have waitlists or be out of network, so try to help your loved one with scheduling an initial appointment and figuring out insurance details.

Use the Made Of Millions Get Help page to see a list of resources. 

For an affordable option, try the NOCD app, which connects people with specialists through teletherapy.

Support groups can be super helpful for OCD recovery, so encourage your loved one to join one alongside treatment. You can find support groups for OCD through NOCD and OCD Peers.

Remember that starting treatment can seem intimidating to someone with OCD. People get stuck in compulsions to relieve anxiety and stay “safe”, so it can be scary to break out of that cycle. 

This is especially true for those who have more taboo themes and are afraid of being judged or even wrongly reported for disclosing their thoughts. Remind them that with a qualified therapist, help is available and recovery is possible.