Stigma or Misperception?

The word stigma is defined as a mark of disgrace or infamy. We hear the term used frequently in reference to how mental illness is perceived, and rightly so. But I have to admit that, for me, stigma never seemed to fit quite right when specifically talking about obsessive compulsive disorder. One of the reasons for this, I think, is that the general public thinks that OCD is just not that “big a deal.”

I’ve seen this reaction firsthand. When advocating for college accommodations for my son Dan, some of his teachers, as well as the head of the academic resource center, were skeptical that having OCD warranted any kind of ongoing support. I could see what they were thinking: So he has OCD. He probably spends a lot of time washing his hands and avoiding doorknobs but we’re sure he can work around it (Dan has never done either). And as embarrassing as it is to admit, when Dan first told me he had OCD five years ago, I pretty much had the same reaction: So he has some quirks. It’s no big deal.

Of course, like all loved ones of OCD sufferers, I quickly learned that OCD is indeed a big deal; a really big deal. What I find surprising is the more I connect with those who suffer from the disorder, the more it appears that much of the stigma they’ve encountered over the years has come from those who know how “big a deal” OCD can be: their own families. Of course family dynamics can be quite complicated, and maybe that’s a topic for another post.  But no matter what the circumstances, to be stigmatized by those closest to you can be devastating.

Both of these issues, of course, stem from the lack of understanding about obsessive compulsive disorder. For the general public, we need to keep getting the word out as to what OCD really is and is not. While the media hasn’t done a great job of accurately portraying OCD, there are some nuggets of hope. I have written before about Machine Man the Movie and encourage you to visit their site. While there are a number of wonderful organizations that help raise OCD awareness, people tend to only seek them out when OCD has come into their lives in some way, shape, or form. Machine Man the Movie can help raise awareness of the disorder in the mainstream of our society.

And what about within our own families? Inclusion in therapy, participation in open discussion, and education can go a long way toward acceptance and understanding of OCD. It is the least we can do for our loved ones.

So once again it all comes down to the same thing: raising awareness and understanding of obsessive compulsive disorder as much as we can, so that those suffering from it can be treated with the respect and fairness they deserve.

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11 Responses to Stigma or Misperception?

  1. Thank you for writing this. The distinction between stigma and misperception is not something I’ve thought about, but I agree with your discussion.

    For the general public, OCD probably does seem like “no big deal,” especially if the person in front of them saying, “I have OCD” doesn’t look like he or she has a problem.

    I’ve been a bit concerned/irritated by the programs that have been on TV (on TLC or Discovery or A&E channels?) about people with OCD. They usually profile a couple of different people per episode. The people they profile tend to have symptoms that I would call “big and loud”–they are very noticeable. The people are not usually able to do much of anything except compulsions. Everyone around them seems to know they have OCD.

    Please understand that I know many people with OCD suffer like that. Many people’s OCD is much more debilitating than mine has been. There are shoes that I have not walked in.

    I believe, however, that there are many people with OCD who seem to “function”–they hold jobs of some sort, or raise families, or go to school. But the agony they are going through doesn’t show on the outside.

    So, in other words, if I have a job and I’m part of a community and I look “normal,” nothing too terribly bad could be going on. Right? So if I say I have OCD, how bad can it be?

    There’s a lot of education that needs to go on. Thank you for doing so much in that regard!!

    • 71 & Sunny says:

      Tina, I too have been troubled by some of those programs. While I applaud the fact that the word is getting out about OCD, these shows do not present a complete picture of the illness. Moreover, some of the episodes seem to show people getting significantly better in about 12 weeks. Perhaps that is true for many people, but it sure wasn’t for me. I feel that it enhances the idea that it is no big deal if life is better in 12 weeks and wrapped up in a bow.

  2. ocdtalk says:

    Thanks for the comment, Tina, and you are absolutely right…….so many people with OCD do not have easily visible signs of the disorder, so it is harder for people to understand, or even believe, that they could be truly suffering.

  3. 71 & Sunny says:

    Janet, you are so correct in stating that so many people think that living with OCD is not a big deal. When my OCD was at its worst, I was truly in the depths of despair. I could barely function. The quote, “Dark Night of the Soul” could really be applied to how I felt. I’ve also seen that agony on the faces of others with OCD. I’m so glad that I went through CBT and have gotten better. I NEVER want to go back there again. I wish I could take that pain away from every other sufferer as well.

    I agree with you that education is key, and I believe it’s important for two reasons. First, it helps to take the stigma away, and secondly, and I think more importantly, it can lead to sufferers getting the right kind of treatment in a more timely fashion.

    Thank you so much for spreading the word about OCD and educating the public about the true nature of this mental illness. It is horrifically painful, but it is treatable, and it is crucial that people become aware of both these facts.

  4. ocdtalk says:

    Thanks for the comment, “Sunny” :). The main reason I’ve become an advocate for OCD awareness is to get the word out that OCD, no matter how severe, is treatable, and that CBT (particularly ERP Therapy), is the treatment of choice for those that suffer from this disorder. So thanks for your support!

  5. I would say that there is both stigma AND misperception associated with OCD. It’s soooo true that people think that it’s no big deal and that is frustrating. I would guess that is because people don’t realize that these behaviours come from ANXIETY – they think people “just wash” out of habit – or because they are clean freaks and just WANT things to be that way. But I also think that there is a huge amount of stigma with all kinds of mental illness. That notion of “just stop” is still so prevelant, and so frustrating.

  6. ocdtalk says:

    Thanks for the comment, POC. I always appreciate your insight. You make an interesting point and I totally agree……so many people don’t realize what is behind all those visible compulsions, and so they think sufferers can “just stop.”

  7. Tina says:

    Hello, Janet–

    I have nominated you for the HUG (Hope Unites Globally) Award. You can find out more about the award by going to

    Please also check out my blog post about the nomination!

    Congratulations! You deserve it!


  8. ocdtalk says:

    Thank you Tina!!

  9. thank you so much for the mention again! we hope this message finds you doing well. . . . .

    team machine

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