by Jon Hershfield, MFT
What people literally see when observing someone suffering from OCD barely scratches the surface of what’s really going on for that sufferer. You might see a woman spending a lot of time in front of the sink and conclude, “Wow, they really hate germs.”
Maybe she does, but all you saw was the washing. What happened between whatever upset her and the decision to go to the sink? The answer is: a million debates. In the short period of time between discovering that she was triggered and deciding to do something about it that you could actually physically see her do, a million debates covered every single aspect of her experience, from what it means that she got triggered, to what it means if she doesn’t wash, to what it means to her personal storyline, and how it affects the people around her and the way she’s perceived.
Challenges of Disclosing OCD
I receive emails on a pretty regular basis from all over the world in which people describe struggling with debilitating OCD symptoms, most of them completely unobservable because they lack a physical component, resulting in individuals feeling completely alone. They tell me things like, “I can’t tell my parents about this because they don’t believe in mental illness and will just tell me to get over it.” Or, “I can’t tell my partner about this because he will think I’m disgusting and it will ruin our relationship.” This usually means they can’t access treatment because they would have to do so secretly and either can’t afford to or don’t have the ability to.
For a lot of OCD sufferers, the content of their unwanted thoughts is so painful and abhorrent to them that just sharing basic information about their experience can feel like a tremendous risk, even to a family member or partner. So the expected response to saying “I think I have OCD” is not, “Well, obviously.” More likely, the expected response is a judgmental, “What are you talking about?” Even if the family member they plan to tell is generally not a judgmental person, the worry that he or she will respond judgmentally is always there. In the centrifuge that is the OCD mind, the good in the world can be hard to see.
OCD is a treatable disorder, and we need to do everything we can to increase access to treatment. But it starts at home most of the time. It starts with individuals connecting together as families and acknowledging that OCD exists, respecting the pain it causes, and bringing people out of isolation and into a safe light. The first disclosure can be the hardest. Here are some tips for making it easier.
Tips for effective disclosure with loved ones:
- You don’t have to lead with “I have OCD.” You can — there’s nothing wrong with it — but not everyone is familiar with OCD beyond what they’ve literally seen, and that’s not much. Maybe they’ve seen a character portrayed in a movie. Is that a good representation of you? If the goal is to open a dialogue and possibly lead to getting treatment without shame, then you might be better off leading with a simple description of your experience. You might share a bit about what you think or how you feel before coming around to using clinical diagnostic terms. “I can’t stop thinking about my fear of…” or, “I’m struggling to resist repeatedly doing…” could be a place to start. If you have found a good article or chapter from an OCD book that describes your experience well, asking your loved one to read it can be useful.
- You can be as specific or as vague as you like, if you remember the purpose of your disclosure. The purpose is to give your family member an opportunity to see you and to empathize with your pain. If you have intrusive thoughts about harming children, for example, you don’t necessarily have to share that if the out-of-context shock is going to overshadow the empathic opportunity. It’s your call. You could share simply that you have intrusive thoughts that scare you, that are so horrifying it would be a challenge to share them right now, but that you might be willing to talk to a therapist about it. Let them know that in this moment, you just want them to know something is going on, you’re in pain, and are interested in seeking help.
- Don’t let your OCD commandeer the disclosure itself by insisting on certainty that you are understood and accepted. If they don’t have OCD, they won’t get it. Even if they did have OCD, they wouldn’t know what it was like to be you and have your OCD. They don’t have to get it 100 percent. Your OCD may say they do. Eighty percent is more than enough. Fifty percent is enough for them to see you need support. Twenty-five percent is enough to reduce criticism and hostility.
- Don’t use disclosure as a strategy to pitch for greater accommodation of your symptoms. The purpose of disclosure is to promote collaboration and empathy, not make it easier to do compulsions. The argument of “I have OCD so things have to be done this way” pushes loved ones away, when what is needed is collaboration and closeness in the fight against OCD.
For family members and other loved ones, some tips for receiving disclosure compassionately:
- Don’t jump immediately into problem-solving mode, dragging your loved one to Amazon to buy an OCD book (you can buy one of mine, that’s okay, of course) but instead, take a few breaths to just be there for your loved one. A hug goes a lot farther than instructions like, “Well, here’s what you got to do…” The first message shouldn’t be about the unacceptability of his issue. The first should be acknowledging the pain and sitting with him. There will be plenty of time to get books, look up a suitable therapist, and get to work on the OCD. But first, just be there.
- Don’t pry for more details. Your loved one with OCD took a brave step into the unknown by opening up to you. Respect that by making it clear that you are fine being on the receiving end of whatever she is willing to offer. Your having more detail won’t necessarily lead to a greater understanding of your loved one’s suffering and could just as easily lead to greater shame on her part for having disclosed more than she thought she should.
- Don’t immediately stop accommodations, even though they are part of the problem. Rather, work with your loved one on a collaborative strategy for gradually reducing your involvement in rituals.
- Ask questions about how you can help, but move slowly. Your family member with OCD is likely overwhelmed; overwhelmed by having revealed himself, overwhelmed by fear that he may have said too much or the wrong thing, overwhelmed that you think he’s sick, crazy, or dangerous. Overwhelmed by OCD. Be gentle.
- Express gratitude for your loved one trusting you enough to speak about her experience. Let her know what it means to you to be let in, even just a little.
If you have OCD, you don’t have to disclose your condition to anyone, even family members. It’s your experience, your life. But if you have people in your life you trust and know to love and support you, letting them in, even just partially in, can have a positive ripple effect on everyone involved. It can be a motivator for seeking treatment, reconnecting with loved ones, and serve as a path toward reclaiming relationships taken hostage by OCD.
Jon Hershfield, MFT is a psychotherapist licensed in Maryland and California, specializing in the treatment of obsessive compulsive disorder, and founder of The OCD and Anxiety Center of Greater Baltimore (www.ocdbaltimore.com) in Hunt Valley, MD. He is the author of When a Family Member Has OCD and coauthor of The Mindfulness Workbook for OCD.