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.