Should OCD be a Family Affair?

This post originally appeared in 2011:

When my son Dan was first diagnosed with obsessive-compulsive disorder, I wanted details. What was he thinking, how was he feeling, is today better or worse than yesterday? The problem was, Dan would not, or could not, share the details of his disorder with me. He was even reluctant to see a therapist because he thought everything they spoke about would be relayed to his parents. Once I explained “doctor-patient confidentiality” to him, he couldn’t get out the door to the therapist fast enough.

I now realize that Dan was on the right track. I was better off not knowing. His OCD dealt with mostly mental compulsions and therefore was not obvious to me, and while I wouldn’t go so far as to say I had my head in the sand, I certainly had no idea how much he was suffering. I think if I had known, I would have accommodated him incessantly, and my heightened anxiety levels wouldn’t have done him any good.

I wonder how many teens and young (and not so young) adults are hesitant to share details of their OCD with their families, specifically their parents. From the blogs and sites I’ve visited, my guess is: a lot. Why? Is it because family members are just too close to share such personal struggles? Do those with the disorder feel embarrassed or think nobody could possibly relate to what they’re going through? One explanation I have seen often is that many parents minimize the OCD with comments such as, “Oh, I do that too,” or “It’s no big deal, you’ll be fine.” While these statements might be well-intentioned (or perhaps stemming from denial or guilt), this lack of understanding and support can be devastating for someone with OCD.

As with most illnesses or disorders, people with OCD seem to benefit from interaction with others who can truly understand what they are going through: other people with OCD. Social media sites, conferences and support groups for those with OCD are widespread.  So I don’t think family members need to know details of a loved ones obsessive-compulsive disorder if the person with the disorder is unwilling to share. What families really do need to know, however, is how to respond appropriately to their loved one with OCD, as this is essential to recovery. And maybe what those with OCD really need most from their families is what all of us need and deserve: acceptance, understanding, and love.

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6 Responses to Should OCD be a Family Affair?

  1. nspalmquist says:

    Unfortunately I didn’t have that choice. (Or perhaps it was fortunate that I could do it…) My child was told by work to get help. I was available to go out of town with while my child got trearment. It was “outpatient” so we lived together in an extended stay place for 6 weeks. I was glad help was at hand but being confronted with the OCD full story force was very hard (while sleeping on a pull out couch). It was a very delicate balance, too. We had lived apart for 6 years, so being back in close quarters under the extreme conditions was a stretch. The family was getting tough talk about accomodations but Iwas having to keep this little motel home moving forward while treatment progressed.

    • Thank you for sharing and I hope the PHP program your child went to was helpful. It definitely is a family affair as far as learning how to deal with the OCD and how to not enable our loved ones. I wish you both all the best!

  2. I agree, Janet, that family members don’t always need to know the full extent of what’s going on with the OCD – they just need to know that it is there and ways that they can be of real help. I wonder, though, if it’s different with children with OCD? Maybe when they are young, it is important for the parent(s) to know what is happening in lots of detail, since they have to go home and implement the interventions taught in therapy. I haven’t thought this completely through, but it seems in my own personal experience and my experience in working with young kids with OCD that parents have needed to know the intimate details. Your thoughts?

    • Thanks so much for sharing your insights, Angie. I wasn’t thinking of young children when I wrote this post as Dan developed OCD as a teenager. What you say makes perfect sense, especially since parents are likely to be involved in exposures at home. My guess is most children are okay with sharing details with their parents? For those who aren’t, I think it would have to be a delicate balance between sharing what is necessary for parents to be helpful and respecting the child’s privacy. Thanks for bringing up this up!

  3. Charles Morningstar says:

    Can you please share some of these with me?

    Social media sites, conferences and support groups for those with OCD are widespread.

    Kind regards, Charles


    • Hi Charles, You can check out the Blog Roll and OCD Resources on the sidebar of this blog. Also,Yahoo sponsors several OCD online support groups. And the IOCDF has an annual conference every year (this year it’s in Los Angeles in July). There are also state chapters of the IOCDF that often have their own conferences and meetings so I would suggest checking out their website to see if there are conferences near you. You might also want to check out NAMI. Good luck!

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