Allison, a 35-year-old from the Midwest, was working at a state fair when she realized she’d forgotten something important in her car. She froze. It would be a quick five-minute trip downstairs and back, but she knew her OCD would derail the errand by turning it into 30 minutes of compulsive checking to make sure her car was locked.
Allison has been living with OCD for over a decade. She’s gone through treatment and recovery, but at times she still experiences compulsions she can’t control—specifically around locks and security. She was stuck. Not wanting to keep her team members waiting, she took a leap of faith and made an odd request of her coworker.
“Would you be willing to come to my car with me and just confirm that I’ve locked it after I do?” she asked. She knew having an additional person there would make it easier.
“You can see she was kind of confused,” Allison tells me. But then her coworker said, “Sure. I’m cool with that. Is everything OK?” Her concern made Allison feel comfortable opening up and sharing a bit about her OCD.
“That sounds rough. I’m sorry you have to go through that,” Allison’s coworker told her.
After a decade of experiencing stigma and shame around her OCD, Allison still remembers the impact of this simple but meaningful exchange. “Those are the people you want supporting you,” she tells me. “[People] don’t have to be able to have all the in-depth information, but just being supportive, and acknowledging the fact that you’re struggling—there’s something they can do, and they’re willing to do it? That’s huge.”
It can be difficult to know how to help a loved one in your life who’s struggling with OCD, or even an acquaintance or coworker. Many of the most challenging aspects of living with OCD are invisible, such as intrusive thoughts and mental compulsions. So, like many mental health conditions, OCD may seem complicated or hard to understand for someone who’s never experienced it.
Here’s what people with OCD want you to know about the condition—and how to best support them.
When You Have OCD, You Can’t “Just Stop”
Stereotypes that cast OCD as a personality quirk fixated on cleanliness and organization contribute to a popular misconception about the disorder. People’s misinformed comments can often be unhelpful and hurtful, even when they’re well-meaning. Not understanding the severity of the disorder can make people think there’s an easy solution to a loved one’s suffering, when in fact, recovery is more complicated.
What are the common comments people with OCD are used to hearing? “A big one is when you have a family member or close friend say, ‘It’s all in your head,'” says Ana Lopushinsky, a 25-year-old OCD advocate from Alberta, Canada. “I’m aware that it’s all in my head—but that doesn’t help me. It’s not validating me or supporting me at all when family members are like, ‘Just stop, don’t think about those things, don’t feel compulsive.’ It’s so much easier said than done. I can’t stop my thoughts or control what I can and can’t think about.”
There are many different subtypes of OCD, and the condition affects everyone differently. But the pattern is generally the same: an intrusive thought, image, or urge causes anxiety and leads a person to engage in a compulsion. For example, a person with harm OCD, a subtype characterized by fear of hurting oneself or others, might experience obsessive thoughts about hurting themselves in their sleep. These fears and intrusive thoughts are distressing and disorienting, and the person experiencing them will often do everything they can to make them stop. But the thoughts are not voluntary, and the actions that follow feel impossible to resist.
Lopushinsky is not the only one to have people in her life minimize the severity of her intrusive thoughts and compulsions. “There was so much, ‘You need to just stop. What is wrong with you?’ and, ‘It’s your fault. It’s your fault. It’s your fault.’ Not necessarily from my parents, but in general from society,” Allison tells me. Even, she says, from medical professionals who didn’t fully understand her OCD.
The most helpful comments to hear from her family were pretty simple for Allison. “The thing that ended up working the most is acknowledgment from my parents that it’s OK, and having them work with me and support me,” she says.
People With OCD Aren’t “Lucky”
“Another one is when people tell you that you should be lucky to have OCD because they assume it is just cleaning and organizing and just being particular about things,” Lopushinsky says.
People may also unintentionally minimize the condition by saying that they have a little OCD, too.
“OCD is a significant disorder, and to say you have a little of it is kind of belittling it,” Dr. Patrick McGrath, Head of Clinical Services at NOCD, explains in a recent video. “We don’t want to do that. We want to be sensitive to how serious OCD is and how much it interferes with people’s lives.”
How To Help a Loved One With OCD—And What You Should Say
A well-meaning comment can reinforce a person’s compulsions. It’s important to understand how reassurance-seeking works for people with OCD so that you don’t accidentally help a loved one engage in their compulsion, which will make their OCD worse over time.
Sometimes reassurance-seeking can be easy to spot, but other times it’s more difficult. “I would ask my husband, ‘Do you ever have thoughts of swerving off the road’?'” says Mollie Albanese, a Virginia-based peer advisor at NOCD. Everyone asks themselves questions like these from time to time, and it’s normal to want confirmation that you are normal. But for people with OCD, these questions are recurring and specifically meant to relieve the anxiety of their obsessive thoughts. The relief works only temporarily.
Albanese elaborates on her reassurance-seeking: “I would have to ask people, “Am I a bad person for having these thoughts? Should I be having these thoughts? What does this mean about me?”
People with OCD might not be aware these questions are part of their compulsion to seek reassurance, but they ask them because their thoughts are stressful, and an answer helps convince them these thoughts are untrue. “I just need that reassurance because OCD is making me feel so guilty about these thoughts,” Albanese explains.
Refraining from reaching out to others for reassurance was a big part of Albanese’s recovery journey. One of the most helpful things a loved one can do is learn about the condition, the person’s specific compulsions, and how to spot the signs they are seeking reassurance.
“I had to work on sitting with the anxiety and not asking for reassurance,” Albanese tells me. “Part of my recovery has been sharing what works and what doesn’t work in terms of what to say to me. That includes how not to provide reassurance when I need it, and how it is not good for people with OCD. For me, that’s a huge exposure and a major thing I had to work on: not engaging in compulsions and then not doing things that will provide reassurance.”
People with OCD are not alone
Sometimes the best way to support a loved one who’s struggling is to remind them that they are not alone. Lopshinsky recalls one of the most helpful and validating comments she’s received in her OCD journey. It came from her therapist: “There are so many other people out there like you, and you’re not the first person I’ve worked with who has these thoughts to do these impulses.”
When it comes to supporting a loved one who’s struggling, it’s helpful to remember that “not everything is visible,” Allison says.
“Not everyone sees or experiences the world the same way,” she explains, comparing OCD to hearing or vision impairment. “Everyone’s finding some sort of balance—you just don’t know what it is. It’s easy to sympathize with those who have a visible injury or physical ailments, or handicap of some sort. But it’s typically much more difficult [to sympathize] when it’s invisible.”
Exchanges like these happen every day, and if we’re not paying attention, it’s easy to miss that a loved one is struggling with an invisible condition. When Allison’s coworker responded with an open mind to her request, it opened the door for a conversation about OCD and gave Allison confidence that the next time she needed to reach out for support, she’d find the help she needed.
If you or someone you know is struggling with OCD, you can schedule a free call with the NOCD care team to learn what kind of treatment is available. Each of our therapists specializes in OCD. They receive specific training for OCD and ongoing guidance from our clinical leadership team. Many have experienced OCD themselves and understand how crucial it is for therapy and support to be OCD-specific.