Earlier this week, I shared here on the blog that I’ve been diagnosed with OCD.
The diagnosis isn’t new, but this is the first time I’ve spoken about it so publicly and personally. Doing so was scary and also liberating. Something about putting it all down on paper (or, well, screens) helped me accept it just a little bit more. Helped me feel compassion for myself like I would for someone else. Helped me see it from a different perspective.
Before I published the piece, I ran it by two friends who are excellent writers and humans and who I trusted to tell me if anything on the page didn’t make sense. One of them wrote back and suggested that I include a section on What to do if you love someone with OCD.
How can friends and family better support someone with OCD? How should we act and react? What do you need?
The idea was such a lovely, thoughtful, wonderful one and I knew right away I did want to put something like that together. And I wanted to do it as its own standalone post. A post entirely devoted to how you can support those you love when they tell you that they have OCD.
I asked my OCD support group for their input. I spent some time thinking about the moments that I’ve felt supported (or not). And I put together a list.
Before I get into it, though, a caveat: Every person with OCD is different. We’re not a monolith. Some of my obsessions are common ones; some aren’t. And compulsions run very different from person to person. What works for me may not work for someone else. These suggestions are based on my own experience and the feedback from my OCD support group.
Now, unto the breach…
It’s human and universal to want to be seen and understood. To feel like the person you’re sharing with, especially on a topic as vulnerable as OCD (or depression or anxiety or PTSD or grief – and on it goes), is really, truly listening and really, truly understands what you’re saying. This is one of the great benefits of therapy. Being able to let all your walls down (over time) and have someone see you and still love you.
And we need it from our friends, too.
So when someone tells you they have OCD, don’t make a joke or say “your house must be so clean!” Instead, just listen. Ask a follow up question if you don’t understand. If you aren’t sure what to ask, but you’re willing to listen, say something like “Wow. Thanks for telling me. If you want to tell me more, I’d love to hear more.”
You don’t have to know the right things to say. Even compassionate silence goes a long way.
Ask questions, but not judgemental ones.
I’m not sure if others feel the same way, but I discovered recently that I love talking about my OCD in a small/one-on-one situation.
It’s an enormous relief to talk about it. To even joke about it sometimes.
And maybe I don’t want to talk about all my specific obsessions or compulsions (some are too terrifying and upsetting), but I do want to talk about having it and what it means. I do want to educate people about it. I do want to be able to talk seriously about it and sometimes lightheartedly about it. And even if I didn’t feel relief in talking about it, I never mind curiosity questions. I want everyone around me to understand. Asking a question won’t upset me.
So don’t be afraid to ask questions. And if you’re worried that the person sharing might not want to answer them? You can start with the simplest question of all:
“Is it okay if I ask questions about it or would you rather I not?”
Now, there’s a caveat here. Because while curiosity questions are totally okay, presumptive or judgmental questions are not. How do you know if your question is presumptive? If you’re worried about it, chances are it’s not. The simple act of caring about how your question will impact someone means you’re more likely (in my experience) to ask kind-hearted questions. And if you’re still worried, ask yourself: is this just a question, or is there a hidden assumption built into it?
“What does [neurodiverse/OCD/insert term you don’t understand here] mean?” is a curiosity question.
“What does [neurodiverse/OCD/insert term you don’t understand here] mean–like, you’re crazy?” has added a negative and possibly hurtful assumption.
“What’s OCD like?” is a curiosity question.
“So, you’re like super clean and organized?” is a presumptive question. (Caveat: this question doesn’t bother me personally, but it does bother a lot of people. Assuming you already know what they’re going through rather than simply asking them can sometimes make people feel wildly misunderstood.)
So, some more examples of good/curiosity questions:
:: How long have you had OCD?
:: What is it like?
:: Is there anything I can do to support you?
:: What kind of treatments are available for OCD?
If you have a suggestion, phrase it as a question.
Chances are, by the time your friend admits their OCD to you, they’ve been living with it for a long time. On average, it takes people 11 years from the time they start having OCD symptoms to the time they’re diagnosed. And it may take even longer for them to share with family or friends.
So if you have a suggestion for us, understand that we have probably thought of it, tried it, and tried it again. And it feels a little insulting when your friends think they can solve in five minutes what you haven’t been able to solve in 15 years.
That said, if you have a suggestion and you just can’t keep it to yourself, phrase it as a question. Or, better yet, a series of questions.
“What kinds of things help with OCD?”
“Does meditation help with OCD?”
“Do you think medication would help?”
Those questions feel humble and well-meaning. As opposed to declarative statements like “Oh, try a Whole 30 diet! I bet that’ll fix things right up!” or “I think you should try and go off medication. You’re stronger than that.” It never helps to act like an expert on something you haven’t thoroughly studied or lived.
Compulsions are probably annoying to people on the outside.
Or, at least, some of them are. (Some are invisible and many of us are masters at hiding them from others, which is why it’s easy not to notice that your friend even has them.)
But even if a compulsion is annoying or your partner’s panic is stressing you out, getting frustrated will do nothing but make you both more miserable.
So look for other solutions, solutions that allow you to stay calm.
For example: I’m a checker. I check the stove. I check the electric outlets. I check the door. And it takes time. Sometimes quite a bit of time. But it helps me and everyone around me if we just plan to leave early for every important appointment or event. I’m trying not to check, but leaving early takes the pressure off. If I have to check, I haven’t compounded consequences on top of each other by making us late. If I don’t have to check or checking doesn’t take as long, we arrive early and have time to read or chat or take a leisurely walk.
We need to know that you don’t think we’re crazy or stupid or weak. We need to know that you understand what we’re sharing with you. And this goes for anyone sharing anything vulnerable. About grief or death or PTSD or Major Depressive Disorder or OCD or a whole host of other deeply personal things.
When someone tells you something and you get it, validate it. Out loud. Tell them you hear them and that their feelings or fears or struggles or challenges are valid and human and okay.
“Of course you feel devastated by your grief. You’re grieving because the person you lost matters. Because you loved them. Because you’re human.”
“Of course you feel exhausted! What you just described to me sounds really tiring.”
“What you just shared with me makes so much sense. I’m sorry you have to deal with that.”
These are examples of validating someone’s emotions. They’re all pretty simple and all extremely powerful when they make another person feel heard and understood.
If we ask you to, show up.
It’s really hard to ask for help with something like OCD. Many of us hide our symptoms for years. Or we bring them up in a light, joking way. Or we brush off concern.
So if we ask for your help, understand that it probably took a lot for us to ask. And if you can, show up.
For example: a few weeks ago, I was having my first panic attack in a really long time. I came into the bedroom and told Chad I was having one and asked if he’d sit with me. I lay down on the bed face down and immediately Chad was sitting beside me, rubbing my back (which he knows I love), and talking to me. He started asking about my book, talking about the story I’ve been spending all my free time puzzling out. And over time, I started to relax and refocus and feel better. I needed him to be there and he was.
Now, everyone is different. For some, being touched might make things worse, not better. For some, they may need to talk about what’s triggering the attack. For some, they may need distraction. There are a lot of ways to show up for a person and the most important thing is to know what your loved one needs and to show up for them in that way.
And if you’re in the position where you’re showing up for a stranger in crisis, always ask how you can help first. Give the person back some power in the situation.
Get to know our triggers (if you can).
For someone who’s afraid of contracting AIDS, stories about hospitals, blood transfusions gone wrong, or HIV might be too upsetting to hear.
For someone who’s afraid of killing their pets, animal cruelty stories or petitions, even when told in order to save those animals, may be unbearable.
For someone who’s afraid of their house burning down, candles might be unacceptable in the house.
Be aware (if you can and if your friend has shared with you to that level) that what you say and do can be calming or panic-inducing. This doesn’t mean you have to tip-toe around your OCD friend. It just means if you know that stories of child abuse trigger an OCD reaction, don’t share the latest Congressman-Convicted-of-Child-Porn headline. Little things like that can be a help.
Don’t push for or against a treatment unless you’re a trained professional.
Unless you are a trained professional, it’s never a good idea to push someone toward or against a treatment. There have been times in my life when I needed to be on medication. During those times, I’ve had multiple people pressure me to get off them. “You don’t want to be on meds your whole life, do you?” “You’re stronger than this.” “You want to be off as soon as possible, right?”
Guys, all these kinds of reactions do is shame the person who needs the meds. Please, let those decisions be between me and my doctor. Don’t imply that medication somehow makes me a weaker person or that it’s always a temporary thing. Medication has absolutely zero to do with strength. It has to do with using every tool we need to in order to live the best, fullest, healthiest, most joyful life we can.
Conversely, I’ve had people push me toward medication when I wasn’t on it. This is equally unhelpful (unless you’re my doctor) and falls under the category of “friends trying to solve in five minutes the thing you’ve been trying to solve for 15 years.”
Now, the exception to this is if your friend is self-treating in a way you’re afraid will harm them or if you are a trained professional and/or have access to information that suggests the treatment their doctor suggested might be harmful.
For example, if I tell you I’m trying Medication Z and you read a scholarly journal article in Psychology Today that suggested Medication Z has some serious, life-threatening consequences, asking “Have you talked to your doctor about side effects?” is a kind and caring response.
Or, if I tell you I’m not going to go to therapy, but I am going to join a cult in order to cure my OCD, gently encouraging me to talk to a therapist also feels like a caring response.
If you want to understand, there are lots of great resources out there about OCD.
For something highly technical, grab a copy of the DSM from your local library and read the entry on OCD.
For an excellent, easy-to-read first-person account of living with OCD (with plenty of other stories woven in), I loved The Man Who Couldn’t Stop.
And ask your OCD friend if they have any resources or stories to recommend.
As I mentioned above, I’m 100% okay with curiosity questions. If there’s something you’d like to know about my experience of OCD, resources, etc. etc., please feel free to ask a question in the comments.