OCD Advocacy – Is it a Responsibility?

At the International OCD Conference in July, several people asked me why my son Dan wasn’t with me. My husband and daughter (neither of whom have OCD) had come along just to see Chicago, but Dan had no interest in joining us or attending the conference.

On more than one occasion, people have commented how great it would be if  Dan, and other “OCD success stories” showed up more frequently at conferences. It would be so inspirational for those still suffering from the disorder to connect with, not a few, but a lot of people who have conquered OCD. I had never really thought of it that way because, to me, most OCD sufferers that attend conferences seem to be “success stories.” I realize now that my assumption is naive, as we never really know how much someone might be suffering. People who outwardly seem to be doing just fine may be tormented inwardly. This is especially true for those with obsessive-compulsive disorder.

So do those who have recovered from OCD (meaning it plays little to no part in their lives) have a responsibility to those who are suffering now?  Maybe they can’t wait to share their success story, and that’s great. But maybe, once they’ve beaten their disorder, they just want to get on with their lives. Maybe, if their OCD was severe, they’d rather not even think about what they’ve gone through. Why would they want to dwell on such an awful time of  their lives? Should they feel obligated to do so to help others?

It’s not an easy question to answer. As an advocate for OCD awareness, I think, “Who better to inspire and instill hope in those who are suffering from OCD than someone who has overcome it?”  As a mom, I think, “Dan’s been through a lot. If he’s not comfortable going the advocate route, then of course it’s his choice and I respect his decision.”

I do feel that all of us have a responsibility to try to make the world a better place, and each one of us has to figure out the best way to do that. Dan may not be shouting from the rooftops now that he has overcome severe OCD, but maybe at some point in his life, sharing his story will become important to him as a means to help others. If not, I am confident that he will find other ways, as he has done already, to make the world a better place. Really, what more can I ask for?

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10 Responses to OCD Advocacy – Is it a Responsibility?

  1. Tina Barbour says:

    Janet, I think you said it well when you said that we have a responsibility to make the world a better place, and each person has to figure out how to do that. I agree.

    Do those of us with success stories–even if not fully recovered–have a responsibility to share our stories and advocate? No. It’s wonderful if we do, but I don’t think it’s a “have to” or “need to.” We can’t live our lives based on the expectations of others.

    Thank you for a though-provoking (as usual!) post.

    • ocdtalk says:

      Thanks, Tina. Well, that is certainly true: “We can’t live our lives based on the expectations of others.” Thanks for the reminder that we all have to do what works for us.

  2. Amy says:

    Interesting post and question! I don’t think that folks have an obligation to serve as advocates. I think that every person gives back in their own way–sometimes in subtle ways that you might miss and sometimes it takes a long time to be healed enough to give back.

    Many psychologists either experienced a mental illness themselves or had a close family member who had a mental illness. Understanding the illness, helping others who have it, and preventing people who are at risk for it from experiencing it are goals that are driven from that continued need to beat the illness and show it who is the boss. Other people become amazing parents who work hard to try to prevent their children from experiencing the illness or at least reduce the symptom severity if their children end up with it. And still others scream it to the rooftops and become advocates (like yourself). Each of these things makes a difference in others’ lives and is a way of continuing to heal from the emotional damage left in the illness’ wake. So I am sure that your son will do his part in some way if he is not already.

    • ocdtalk says:

      Thanks for your comment, Amy, which brings to light the many faces of advocacy. Your insight is appreciated and you bring up a very important point: making a difference in others’ lives promotes healing in our own.

  3. 71º & Sunny says:

    Janet, I absolutely think it is not an obligation of everyone who has overcome OCD to be a spokesperson or advocate. We are all wired so differently and some of us are just not comfortable with sharing such personal and painful details. I think that is just fine. Plus, like you said, Dan is making the world a better place in his own way, with his own special gifts, and I think that is awesome. Plus, I think he is advocating for mental illness in a way – I know this blog is anonymous, but he’s still allowing you to share his story and I know that has been helpful for lots of people. Dan certainly doesn’t need to attend the OC Conference to make a difference in the world of OCD. He’s already done that through your wonderful blog!

    • ocdtalk says:

      Thanks for the “pep talk” Sunny! Yes, it’s true, Dan has no problem with me sharing his story, and living his life in a positive manner is in itself a type of advocacy.

  4. Holly says:

    I think you’ve got the right attitude. Advocacy doesn’t always have to be done in a big “rah, rah” kind of way. Dan has probably participated in subtle advocacy his whole life through interaction with others – helping them to see the person behind the diagnosis – so they’ll be able to see past the diagnoses of other people. In his on way, he’s probably blazed a lot of trails for others coming after him. No one should discount the affect of day-to-day advocacy.

    • ocdtalk says:

      Thanks for your insights, Holly, and I think you make an excellent point. Dan has a lot of friends, and they all probably know a lot more about OCD than most people, because Dan is open to talking about it with them. This is, as you say, “subtle advocacy,” which absolutely fosters understanding and acceptance.

  5. krystallynn says:

    Although I am thankful for those who advocate for us with OCD I certainly would not want anyone to feel a forced responsibility to do so. I blog about OCD but never would have done that even 2 or 3 years ago. I think people with OCD tend to have a heightened sense of responsibility to begin with and I would never want someone to feel an obligation to advocate until (and if ever) they wished too.
    There is an incredible amount of pain and suffering that we go through with OCD and whether you are a sufferer or in recovery, it can be very difficult to speak or write about. I have already written a blog post with tears streaming down my face, just from the memory of how difficult of a time I had or was having, but I felt it was healthy for me to get it down in words. If I thought it was not helpful, I would stop because one of my biggest responsibilities right now is to see that I am healthy so I can be the wife, mother, grandmother and friend that I want to be.

    • ocdtalk says:

      Thank you so much for your heartfelt reply, Krystallynn. You bring up a great point about those with OCD and hyper-responsibility, and I would never say to Dan, “Why don’t you advocate more?” It is easy for those of us without the disorder to distance ourselves from the pain and suffering of our loved ones, but you have brought home the point that, even if you have OCD and are doing very well, the torment and anguish of your past experiences is always very real.

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