When Dan was first diagnosed with OCD, 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 to the therapist fast enough.
I now realize that Dan was right. I was better off not knowing. Dan’s OCD dealt with mostly mental compulsions and therefore was not obvious at the time, 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 already 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 either.
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 forums I’ve visited, my guess is: a lot. Why? Is it because family members are just too close for comfort or can’t understand what the OCD sufferer is going through? One explanation that 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.” Whether these reactions stem from denial, guilt, or something else, I don’t know. But this lack of support can be devastating for an OCD sufferer.
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: fellow sufferers. Social media sites, conferences and support groups for those with OCD are widespread. And so I don’t think family members need to know details of a loved ones OCD if the sufferer does not want to share. What families really do need to know, however, is how to respond appropriately to their loved one with OCD, as this can be paramount 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.
ocdtalk 
At least for me, I don’t share many details with anyone because I’m embarrassed by what the obsessions all entail. It’s hard to talk about, it’s scary, and it’s something I don’t expect others to really understand. It’s nice to know people that love me are there to listen, but for me, OCD is a personal struggle and I typically only share when I feel comfortable. I think you hit the nail on the head…families are great at giving the love and acceptance.
Thanks for your comment. I actually think you hit the nail on the head: OCD is a personal struggle. It’s just hard to watch someone you love suffer and not be able to make it “all better.”
You are exactly right. Even though I know, in hindsight, that I was suffering from OCD symptoms as a teenager, my parents completely minimized my problems. I know they didn’t do it to hurt me, but I sometimes feel that they ignored my “cries for help.” (See the BLT sandwich incident on my blog). So I do think that parents need to be aware of signs that their children want their help.
Thanks for your comment. I just read your BLT blog entry….that’s quite a story. Hindsight is a wonderful thing, and maybe the lesson to be learned is to err on the side of caution. If your child is telling you, in one way or another, that something is wrong, it’s better to check it out with a professional than to just assume the problem is due to “teen angst”, or whatever, and doesn’t need to be taken seriously.
The reason I haven’t disclosed my OCD to my parents or family and still haven’t is due to the nature of the obsessions. They are too horrendous and heart-wrenching for me to be comfortable disclosing them to my own parents. Couple that with strained relations over the years due to some issues with a refusal to understand mental disorders in general and there is just a recipe for me not being willing to reveal them to my family. I know now they are just thoughts and I am over my OCD insofar as symptomology goes; however, the powerful emotional sadness from those many years of having those kinds of horrific and graphic thoughts still remains anchored to my experiences with my mom and dad and my family in general. It can probably be said by an OCD specialist that if I were truly “over my OCD” that this would be something I could deal with. And I would say to them that if you believe this and tell me this then you truly don’t understand
the agony of dealing with obsessive compulsive disorder.
Obviously, you need to do what is best for you Scott, as far as your family goes. I’m just wondering if, it’s something you felt you wanted to do, you could share with them that you have OCD, but let them know that you do not want to share any details. Dan never shared specifics of his harming obsessions with us, and that was fine. We didn’t need to know. We just wanted to be there to support him however we could. Thanks again for sharing your story.
Sorry Janet – I misspoke – they know I have OCD – it was a big part of my story with them earlier in my life like your’s is with Dan. Like Dan I haven’t disclosed my harming obsessions to them. That’s what I meant to say. Thanks for the advice.
My opinion here is very similar to my post in: To Tell or Not To Tell. The person who has the OCD has to make a carefully thought out judgement call about who to tell, including family members: Will it aid in the recovery process or hinder it if I inform my family? Will it improve my relationship with my family or damage it? If I want input from my therapist I’ll ask for it, but I reserve the right to disagree with my therapist and discard that feedback. In my case it was a “no brainer.” First, my father suffered for about half of his life with severe depression which required inpatient treatment two or three times, so my entire immediate family was very familiar with living with someone who suffered from a severe mental health problem. Second, my symptoms were almost impossible to hide because needing reassurance from family was one of them. Fortunately for me, since the family was familiar with my father’s health problems, they understood immediately that I was very ill and needed support. When my symptoms first appeared, there was no way I could have kept my family from knowing that I was in trouble.
One of the many things that I find fascinating about OCD is how many different types of symptoms there are!
Thanks for sharing, Paul, and those are great questions you suggest people ask themselves before deciding whether to share they have OCD. I see why you say in your case it was a “no brainer,” especially with such obvious compulsions. I agree that it is fascinating how differently OCD can present in different people. Our son had no problem hiding his OCD from us……..and he lived with us!