When I started treating obsessive-compulsive disorder (OCD), it didn't take long to see that the condition affected not just the person with OCD, but also their families and other close relationships.
Part of the challenge for family members is that the best way to manage it is usually counterintuitive. The best treatment, in fact, is based on the idea of doing the opposite of what the person with OCD is driven to do.
When I meet with the family members of a person with OCD, they often express dismay to realize that they've been unintentionally fueling the OCD. For example, most people with OCD will ask others for reassurance in order to reduce anxiety about their obsessive fears, like when they see a spot on their skin and ask a family member to confirm that it's not cancer.
We typically assume that it's good to reassure a worried person, but when OCD is driving the worry, reassurances actually reinforce the cycle of OCD. Any relief the person feels will be short-lived, quickly replaced by a rebound of the obsessive fear and new efforts to get reassurance. Lasting peace comes through learning over time to tolerate uncertainty.
I spoke about these issues recently on the Think Act Be podcast with Dr. Belinda Seiger, a fellow psychologist and OCD specialist.
OCD and Families
Seth J. Gillihan: What are some ways that OCD often affects families?
Belinda Seiger: One of the key features of most OCD is the seeking of certainty. For example, a child may fear that something will happen to their parents, and the child will seek reassurance — asking parents to sit by their bed, to stay with them, to assure them that they'll still be there when the child wakes up, and then asking the parent to do that again, and again, and again. That repetition is a hallmark of OCD because it's pretty normal for a kid to fear that something might happen to a parent.
When a family member is seeking constant reassurance — whether it's a child or a teenager or an older person — it's exhausting: "I already told you I'll see you later . . . I already told you I'll be here." And family members may become so frustrated that their reassurance isn't working.
So the level of exhaustion and frustration, irritation, and anger that family members feel when they don't realize the person has OCD can be really damaging. But once they realize the reassurance-seeking is OCD, they learn how to handle it, which causes such an improvement in relationships for everyone.
SJG: That idea of not giving reassurance is so counterintuitive, whether it's from a parent to a child or from a therapist to a patient. Giving an anxious person reassurance is the right thing to do, for about 97 percent of the people you run into. It's normal to tell a child who's anxious about going to school, "It's OK, honey, nothing bad is going to happen, you're safe...." But what you're saying is that not only does reassurance not help with OCD, but it's actually unhelpful.
BS: Yes, absolutely — and that is a tipoff that you're not dealing with anxiety; you're actually dealing with OCD. Health OCD is a very excellent example. If a family member fears that something is wrong with their health, because there's a little mark on their body, or they have an ache or a pain, and they've gone to the doctor and everyone has cleared them and there's no sign of any serious health issue, and yet they keep going back to a family member, and they keep asking, "Do you think I'm OK? Could this be cancer?" — that lack of response to reassurance, and even the exacerbation of anxiety, is so key to look for in OCD.
For family members who read this and might be tempted to stop giving reassurance immediately, Belinda offered a word of caution.
I do want to warn people not to cut off reassurance to a family member until they have a diagnosis of OCD from a trained OCD specialist, because that can cause a lot of anxiety and panic for anyone.
Education About OCD
SJG: OCD is hard for people to understand if they don't have OCD themselves, because by definition the concerns and behaviors don't make sense. So how do you help family members who get frustrated that they can't seem to get their loved one to "listen to reason?"
BS: Education about the nature of OCD is key. It is extremely illogical. I call it a "bully in the brain," and the research shows that OCD will take whatever the person cares about most and cause the person to have worries about that very thing. So if someone loves their family dearly, they might have an illogical compulsion to check on the family, or intrusive thoughts that they're harming the family member.
I explain to family members that it's illogical — if they care about your well-being, OCD will flip that and make them worry about hurting you. And that kind of explanation seems to help, and family members catch on that it's totally illogical — rational thought is not at play here!
SJG: And trying to talk someone out of their obsessive fears is just a recipe for frustration. It's kind of like talking to someone who doesn't speak your language, and you think if you just repeat it and say it louder and louder that eventually they'll get it.
BS: It can be hard for parents or spouses or partners to understand that they need to give up the reassurance and explanations and constant efforts to try to change the way of thinking of the person with OCD. That's not the best way to help them. So education and family therapy, and role-playing in the family therapy session, are essential to helping families and the individual with OCD.
Reluctance to Seek Treatment
SJG: What can family members do if the person with OCD isn't willing to get treatment?
BS: They can come to therapy themselves and learn more about OCD. There are also a lot of great YouTube videos on OCD by experts. Educate yourself and learn as much as possible about OCD from informed sources. The International OCD Foundation is the go-to gold standard for information about OCD — they address the needs of families, parents, partners, spouses, and individuals with OCD.
Helping a Family Member in Treatment
SJG: What happens after you've introduced the treatment principles, you've been working on things for a while, the person with OCD is doing their exposures and ritual prevention at home — how do you advise family members to respond when their loved one isn't following the treatment instructions? Let's say they just keep doing repetitive hand washing.
BS: Then it's time to have a very important discussion with the OCD sufferer because you want to make sure they're motivated, that they feel hopeful, and that they understand the treatment process. And we'll explore issues of shame and embarrassment and feeling very exposed to family members because it makes you feel vulnerable when loved ones know you're doing behaviors that are based on irrational thoughts.
So we go back, and we provide a lot of supportive clarification on what motivates the individual to get treatment, and how they feel about family members knowing about and participating in the treatment. And you reinforce their why for doing the treatment, and the reasons to be hopeful. And we make sure the person is interested in involving their family members, and what's comfortable for everyone in the situation.
SJG: And that varies so much — some people say, "If you see me doing something that I'm not supposed to do, remind me," and other people say, "It's just going to drive me nuts if you do that, and it just makes me more anxious, which makes it worse, so don't say anything." So family members often struggle, because they'll say, "I know he's not supposed to be doing this, and it's not helping him, but do I make it worse if I say something to him? Do I have a responsibility to respond?" And it sounds like it really varies a lot depending on the individual and where they are in their treatment.
BS: Absolutely, and I tell families the best thing to do is to ask. You can ask your family member, "Hey, I see you are doing your ritual — would you like me to help out? Would you like me to remind you that you're not supposed to do it? Would you like me to remind you to practice your exposures?" That communication is the key: Would you like me to help you out with your OCD treatment, or do you want me to stay out of it? And it's better to ask before the person is engaged in their rituals or compulsions.
I should add that people who have OCD can become depressed. They feel bad when they're engaged in this kind of intrusive thinking, and they feel like they can't get on with their day. So you can be compassionate and say, "Hey, I see you're feeling down, you're having a bad OCD day."
Belinda highlighted factors that can increase OCD symptoms, especially high levels of stress.
People with OCD feel worse at some times than at others. Stress, change, impending stress, moving, a new job, if they're starting classes, or retiring, or even going shopping or going out to dinner with friends — anything that causes stress in a person's life can exacerbate OCD. So being aware of your loved one's triggers can help in that communication process.
The Challenge of Family Accommodation
SJG: Let's talk about family accommodation — what is it, and why is it a problem in OCD?
BS: If you have a family member with OCD, it's natural to want to make life easier for them. So let's use an example of school refusal due to OCD. Parents often will feel terrible when they see their child distressed about going to school — for example, because they're afraid they're going to get contaminated at school or be exposed to other people's illnesses.
And the parent may think, "Of course — I'll send them to school with wipes, and I'll give them hand sanitizer! And then they can wipe the desk, and they can sanitize their hands and wipe their lunch box" — and that does help . . . for a while. This is an accommodation. They don't want to see their child distressed, so they load them up with these things, or they'll even keep them home and help the child avoid the situation.
Similarly, if an adult with OCD doesn't want to go into the kitchen to cut vegetables, because they feel disgusted by tomatoes, a family member might say, "OK, I'll do that for you." That's an accommodation that actually glues OCD into place. It helps the person avoid the anxiety and the feared situation, and unfortunately, while it's done out of love, it actually facilitates OCD avoidance.
The research clearly supports what Belinda said. A large number of studies have found that greater family accommodation is associated with more severe OCD and a poorer response to treatment. Belinda continued by discussing how family members can phase out OCD accommodations:
So with the help of a therapist who's knowledgeable about OCD, the family members gradually start to be less accommodating, with the buy-in of the person who has OCD. If you are a family member of a person with OCD, and they didn't say, "I don't want you to continue those accommodations," that could actually exacerbate problems, fights, and aggression in a family. So it has to be with the agreement of the person suffering from OCD. And that's best done with someone like a therapist who's really knowledgeable about family dynamics.
SJG: What would you say, though, for a family that's just had it and says, "We're not going to do these things anymore. We're not going to spread the OCD among the whole family," but the person with OCD isn't going along willingly — is there a place for families to make a kind of unilateral decision?
BS: There's something called a "family contract," where family members could agree as a team, and then inform their loved one: for example, "We're not going to avoid driving on Saturday anymore," or, "We're not going to avoid driving in the rain anymore — we're actually going to do it." And as a team, explaining that "this is OCD, and we're not going to accommodate your OCD. We're on the side of health. We are not teaming up with the bully in your brain. We are teaming up with helping you to get better."
It has to be done as a team, through a contract with the person who has OCD, and it's much better if the whole family's onboard — certainly with the person with OCD, but sometimes everyone else in the family agreeing, "We're not avoiding this situation on behalf of the family member with OCD."
SJG: On a related note, how do you help family members manage the removal of reassurance?
BS: Of course we first educate them — this is what OCD is, and everyone's onboard — and then we gradually help them to cut the reassurance down. Usually what exposure therapy looks like is a period of time intentionally carved out in which the person with OCD and their family member (if they're on board) will practice the OCD treatment at home. We don't want someone to practice all day when they're not ready or in the beginning — they might take 15 or 20 minutes twice a day to do the exposure. During that period the family member can do the opposite of reassurance — that's actually part of the treatment.
And they try that once a day, or twice a day, and then gradually lengthen the time during which they do not provide reassurance. Now we're trying it for two to three hours, for the whole day, for two or three days, and they continue to check in with the therapist to talk about what it was like. That's the best way to gradually increase the cessation of reassurance. I've had a lot of success with parents doing that kind of exposure with their kids and other family members — it really works.
It's worth noting that different therapists have different approaches for eliminating reassurance, and the specifics may also depend on the nature of the OCD. Some therapists prefer a more abrupt approach, encouraging the person with OCD to ask their family members not to provide any reassurance once active treatment has begun. Occasional reassurance can mostly undo the benefits of exposure and ritual prevention for some individuals or some types of OCD, prolonging treatment and delaying recovery. Ideally, the person with OCD will take the lead by not asking for reassurance, with families understanding what to do if the person gives in and asks.
Alternatively, reassurance can be phased out based on the type of reassurance — for example, maybe reassurance about contamination is easiest to give up, whereas eliminating reassurance about being a terrible person will need to wait until later in treatment. The key is to find a balance where the OCD compulsions are eliminated as quickly as possible, at a pace the person is able to tolerate.
Reasons for Hope
SJG: For families that are facing OCD, there are many reasons to be hopeful. So I'm hoping you could share an example (obviously without revealing identities) of how you've seen families come together to overcome OCD.
BS: In this case, I was working with the parents of a 10-year-old child with a younger sibling in the family, and the child would not eat certain foods, because they felt the foods would contaminate them. So we had to get both parents on board and educate them about OCD, and the child, as well. And one of the fun things we did was have them bring all the foods they would love to eat into the office, and there were 9, 10, 15, 20 foods this kid was bringing in. They'd been eating only two foods, and in a very short amount of time — two months — they were eating everything.
SJG: I love this example because it really shows how the right treatment can have a life-changing effect not only for the person with OCD but for the family.
If you or someone you know is suffering from OCD, consider visiting the website of the International OCD Foundation, an excellent place to find reputable information about OCD and its treatment.
You can also use the "Find a Therapist" function on PsychologyToday.com to look for a therapist; just make sure the person is experienced in treating OCD with research-supported Exposure and Ritual Prevention (ERP) Therapy.
The full conversation is available here.
Lebowitz, E. R., Panza, K. E., & Bloch, M. H. (2016). Family accommodation in obsessive-compulsive and anxiety disorders: A five-year update. Expert Review of Neurotherapeutics, 16, 45-53.