Living with unmanaged obsessive compulsive disorder (OCD) is miserable—I know because I’ve likely had it since I was a teenager and was officially diagnosed in 2014. No, it’s not merely having “you’re-so-OCD” perfectionism or organization skills ascribed to the condition on TV and in movies. And given that an estimated 2.3 percent of the population deals with OCD over the course of a lifetime, chances are you know someone suffering from or managing OCD, so it’s important to understand what the condition is and what it isn’t.
Clinical OCD, contrary to the whimsical quirk often depicted in the media, is characterized by intrusive, disturbing thoughts (obsessions), and repetitive, ritualistic behaviors (compulsions) that temporarily alleviate the distress.
The OCD reel might go a little something like this: “You might experience a frightening or horrible thought, feeling, or sensation of ‘not-just-rightness’ or a sense of dread, and so you might do a ritual—like check for safety, or ask for reassurance—to make yourself feel better for a bit,” Lisa Coyne, Ph.D., a licensed clinical psychologist and assistant professor of psychology in the Department of Psychiatry at Harvard Medical School, tells SELF. “And it works. That’s why people do it. The downside is that it only works for a short time, and the more you engage in rituals, the more it feeds the OCD.”
For instance, fighting to appease distressing visions of my infant daughter dying in a fire, I would stand in front of the stove touching the knobs in repetitions of five, never quite sure that it was truly off, doubting my own senses. “There’s nothing wrong with checking the stove once, but the problem with OCD is that once is never enough,” Jenny Yip, Psy.D., a clinical psychologist and institutional member of the International OCD Foundation, who also has OCD, tells SELF. “OCD thrives on doubt, and it demands black-and-white certainty. The problem is that having complete certainty on anything in our world is not realistic.”
Fortunately, OCD is treatable. The recommended evidence-based first-line treatments for OCD include cognitive behavioral therapy (CBT), a type of psychotherapy that trains the mind to react differently to intrusive thoughts, and other related psychotherapies like exposure and response prevention (ERP) and acceptance and commitment therapy (ACT). Medication can also be helpful, particularly serotonergic antidepressants. The medication I started in 2011 has continued to help alleviate my symptoms, and working with a CBT provider following my diagnosis in 2014 has given me tools to manage them. But OCD never really goes away, ebbing and flowing with the stressors of life. “OCD sufferers have to come to terms with the fact that intrusive thoughts will still happen even after treatment,” Yip says.
That’s where loved ones come in: Having a strong support system can be key to dealing with a mental illness. But, with my OCD, what I didn’t realize is that the way my loved ones—my spouse in particular—responded to my behaviors played a huge role in my ability to manage my symptoms.
In retrospect, back when we were dating and during the first few years of marriage, my husband Jesse’s understanding and reassurance reinforced many of my symptoms.
“Jesse! Don’t forget to make sure the stove’s off and the door’s locked,” I’d yell from the bedroom, after reluctantly tearing myself from the stove (and the door lock, and the light switches) so I could make my way to bed. When he turned in for the night, I’d ask if he checked the stove, the door, and more. Sometimes exasperated but never cruel, he’d reassure me that he did check and, yes, the stove’s off and the door’s locked.
At the worst of my OCD, Jesse’s participation in these rituals didn’t quench my insatiable thirst for certainty—I’d rise wearily from bed multiple times a night, at the expense of sleep and peace, to check again. And again. As Yip explains, even when a spouse or loved one complies with a checking request, that doesn't always relieve someone with OCD. In fact, it may just reinforce their urge to keep checking.
Reminiscing on my love-hate relationship with excessive reassurance seeking (ERS), a common OCD behavior, I cringe at how the disorder cast a shadow over our marriage. “Text me when you get there,” I’d shout after Jesse every single morning, without fail, as he headed to work. As chipper as my voice must have sounded, a small torture unfolded in my head, with visions of being responsible for his untimely death in a car accident holding me hostage even as I went through the motions of the morning.
And almost without fail, my phone would buzz half an hour later with his one-word message: “Here.” If he forgot to text, or chose not to, or took a little longer than usual, panic would bubble up until I confirmed that he was safe. And during particularly stressful weeks (stress is thought to exacerbate OCD), the reassurance seeking questions would flow freely, and Jesse was usually the one caught in their path.
“The baby looks different. Do you think something’s wrong with her?”
“No. She’s fine.”
“I called my dad and he didn’t answer. Do you think he’s ok? What if something happened?”
“I’m sure he’s just busy.”
“My throat feels weird, do you think I have cancer?”
“Oh my god, no, you don’t have cancer.”
Both of us interpreted these responses as supportive, and that certainly was the intention, but they may have actually fueled the OCD cycle.
As kind as it might seem, telling someone with OCD that they don’t have cancer or that the baby is fine “are lies,” Yip points out. “How could a spouse possibly know that their loved one doesn’t have cancer without medical training and CAT scans?” she says. In most cases, a response that “everything is fine” is an educated and highly likely assumption, but it never quite fulfills what someone with OCD is craving.
And responding to these sorts of compulsions in such a matter-of-fact way also reinforces them, in a way. It made me believe my questions were reasonable and valid, and made me constantly seek the temporary comfort that the reassurance provided.
It’s also only a band-aid, a temporary solution. “If you respond with certainty, for example, ‘No, you won’t die,’ the person with OCD will still always wonder and have the same question and continue to ask in a hundred different ways,” Coyne explains. “The best way you can support your loved one is to help him or her tolerate uncertainty.”
I’ve learned, sometimes the hard way, that the healthiest responses to my OCD can come off as counterintuitive and unsupportive. But it’s in my best interest to have Jesse (and any of my friends and family) acknowledge that reassurance can actually fuel my compulsion.
This can be tough given that your loved ones just want to do what they can to appease your OCD (or any mental illness). In my case, my spouse wanted to provide the reassurance that I was desperately seeking, since it often helped me feel better in the moment. But the best way for a loved one to respond to excessive reassurance seeking, according to Yip, is to respond vaguely. Yip says that phrases like, “I don’t know,” and, “Maybe you will, maybe you won’t,” are better replies.
If someone is in treatment and working on their OCD, it’s important to “reduce accomodation,” Coyne adds. In other words, she explains, you don’t want to help the person with OCD by trying to make their rituals easier. But if someone is just beginning to treat their OCD, you may need to navigate things more sensitively and gradually. “If the person with OCD is just beginning the journey, perhaps treat these requests gently, kindly, but with honest feedback at how those interfere in the marriage, family, work, etc.,” Coyne says.
Coyne recommends loved ones keep a few phrases at the ready:
- “That sounds like a reassurance question. I can answer, but it may feed your OCD. What would you like for me to do?”
- “What if you waited a while before I answer that, and if it still feels pressing for you to know, I’ll tell you later?”
- “Is that you asking, or your OCD?”
One of my favorite, typical Jesse replies to my reassurance-seeking questions, now that he knows better, isn’t a phrase at all but a distinct facial expression with a hint of a smirk and his trademark raised eyebrow, that conveys everything I need to hear: Do you really need to know the answer or is it your OCD?
It’s important to note that my experience doesn’t represent all people with OCD, which is a heterogeneous disorder with a lot of variation in the content of obsessions and compulsions.
I also acknowledge that I’m luckier than others with OCD in a lot of ways. I have health insurance that covers my psychotherapy. I found a medication that worked well to dampen my symptoms. And I have a trusted support system and a partner willing to learn and participate in the approaches that work best for me.
But one thing’s clear—learning about and participating in your loved one’s OCD management can go a long way. “The more they understand, the better allies and supporters they will become,” Coyne says.