Saturday, October 16, 2010

OCD Stories

As many probably already know, the International OCD Foundation hosted an event tonight called "OCD Stories:  An evening of reflection, humor and education about OCD," and anyone with an internet connection could watch from the comfort of their own home via the above link.  It all began at 7pm EST.  The night consisted of several speakers with each telling stories about their experiences with OCD.  Some were doctors or mental health professionals.  Others were sufferers themselves.  But each related their own examples of how OCD has affected their lives and the lives of those around them.

I did in fact watch these stories, and plan on writing more about that later, but I wrote most of this post in advance, reflecting on how I felt about this upcoming event - what I was experiencing prior to watching.  That said, these were my thoughts and feelings about watching, and the ideas that followed from them:

When I see or hear others' stories about OCD I usually have a really mixed set of emotions.  Part of me is curious - I want to know how OCD has impacted others' lives.  Part of me is excited - will I hear someone capture beautifully, through their words and expression, my own experiences with the disorder?  Will their stories resonate with me?  And finally, part of me is anxious, and I'm not exactly sure why.  I think perhaps it's because I wish I could tell my own story in the same way they are telling theirs.  Ever since finding out that I have OCD, I have sort of clung to this diagnosis with an unnatural tenacity and vigor.  It suddenly seemed to explain EVERYTHING.  The things I have learned in treatment seem indispensable to living a happy, peaceful life internally.  I am left wondering, why are not raised with this knowledge?  How do others find peace without it?  I feel like finding CBT and mindfulness has been almost a religious experience for me - suddenly I feel like I have the key secrets to keeping my mind in check, to happiness itself, and I sometimes marvel at how others, indeed most, live their lives without ever knowing these secrets.  Indeed, I didn't for nearly two decades.

Perhaps those without OCD don't need CBT and mindfulness.  Perhaps they naturally self-regulate in a way that my mind, and other OCD minds, don't.  Maybe these tools really are to an OCD sufferer what insulin or diet regulation are to a diabetic - outside aids that compensate for impaired biological self-regulation.  Either way, I feel as though these tools are essential to my well-being, tools that I have lived without for years, years during which my quality of life was compromised, to a certain degree, because my mind would run rampant and unchecked while I struggled to find ways to make up for this deficiency.  With resources like exposure and response prevention and mindfulness, as well as an understanding of OCD, I feel as though I am finally armed.  My mind can run rampant this way or that, urging to me respond or not respond in a certain way, and I now know that no response is necessarily necessary, if you catch my drift.  If my mind says, "You must do this!" Or, "You must do that!"  I know now that isn't necessarily so.  Before OCD said, "Jump!" and I jumped obediently to preserve the peace of my inner world.  What I didn't realize was that my internal comfort wasn't actually in jeopardy until I obeyed.  The very act meant to preserve a feeling of "rightness" inside me was the act that had the power to abolish all sense of that feeling.  So I am left wondering HOW did I live for so long without knowing this?  How do those without OCD live fulfilling lives perhaps without ever being introduced to the tools used to fight OCD and keep it in check?

Like I said, sometimes I feel like the self-discovery and life-changing nature of finding these tools and learning to use them might almost be on par with what some people might feel when finding religion.  In this case, I found mindfulness and CBT.  Mindfulness allows me to recognize that when OCD says "Jump!" that I don't have to.  Even if I don't jump, my inner world will find its way back to equilibrium.  Jumping, compulsing, is not necessary.  I don't have to force feelings to come or go.  They will fall into place, if I stop meddling with them long enough to let them.

CBT and ERP are like the second line of defense against my own tendencies.  If I forget to be mindful (and well, it's hard to be mindful if you didn't even know what mindfulness was, in the first place, much as I didn't before my big relapse), and begin to drift further and further into the world of compulsions and distorted thinking,  cognitive-behavioral therapy and exposure and response prevention help lead me back to baseline.  Once back on target, I can again help myself stay on the main road by being mindful of my behaviors and the reasons for them, being careful to watch for urges to perform compulsions in response to obsessions, so I can catch myself before I go too far astray.  Mindfulness is like a preventative measure keeping the OCD in check.  CBT and ERP are the treatments that help return me to better mental health when things begin to get out of hand.

Again, I am left wondering how do "normal" people live their lives without these tools?  They seem so essential.  Yes, I lived a decent life before I had these resources, but to live a fulfilling life that isn't constantly veering left and right, yo-yo-ing turbulently under the fickle will of OCD, it seems necessary to have these weapons in my arsenal.

But maybe everyone doesn't feel this way.  Maybe most people find themselves self-regulating, staying on path without veering too off course, without having to employ these methods.  Back to the diabetic analogy:  "healthy" people don't have to take insulin or be as careful about what they eat as diabetics, but then healthy people make and respond appropriately to this blood-sugar regulating hormone.  In terms of OCD, "healthy" individuals may not have to be so mindful of their thoughts and behaviors.  They may not have to employ CBT or perform exposures from time to time to keep their minds in check, but then maybe they do this naturally, whereas those who suffer from OCD must rely upon supplemental tools to perform the same functions.

Anyways, my own life story seems riddled with the influences of OCD, a discovery that I have only made fairly recently, one that makes the necessity of mindfulness and CBT seem all the more apparent.  And when I hear others tell their own tales of OCD experiences, I yearn to tell my own.   I yearn to talk about how the tools I have been given to fight my OCD bring me so much internal peace and hope.  How they seem to offer a degree of stability and independence previously unknown to me, a life raft to grab onto until the storm passes and a lesson on how to swim so I can keep myself afloat in the future.

No more cautiously enjoying the good weather, wondering when the next OCD storm will blow through, toppling my life and tossing me overboard.  No more hanging on for dear life as I wait out the wind and the rain, wondering if and when the sun will shine again.  Now I know what to do when the weather gets rough, when OCD starts trying to pitch me about on its choppy seas.  There will still be some days that are worse then others.  There will still be clouds, rain, and winds that sometimes eclipse the sun and make conditions less than favorable.  But when those times come, I will no longer be defenseless.  I will know how to handle the storm, how to wait it out in a way that doesn't exacerbate and prolong its impact.  The point isn't to ensure that I never find myself in a downpour again, but rather to learn how to deal with one so that it doesn't have to be devastating, or even problematic, for that matter.  The point is to learn how manage less than favorable conditions when they arrive, so that I make it through to the other side as safely and smoothly as possible.  And learning to do this will not only make those bumpy times less difficult, but will also make the more tranquil days that much more peaceful.  Knowing that I have the tools I need to keep myself on course, as well as the the problem-solving strategies I need when I do get blown off track, makes those good days that much more enjoyable.

I no longer have to live in fear of the next storm, and I now know that constantly trying to ward one off is not only unnecessary, but what tends to lead me into such storms in the first place.  Over the years, especially this last one, I have veered further and further off course with OCD at the helm, but I am slowly finding my way back with my newfound tools to guide me.  And these tools seem so essential to living a fulfilling life that I marvel at how I was never taught them much sooner.


  1. I also listened online and really enjoyed it. It is always so helpful to connect with people who have OCD and listen to their stories. I liked the message of hope. I do wish that someone had spoke of the chronic nature of the disorder, and talked a little bit about how it is a lifelong challenge that requires management and what that looks like. As someone who is in the thick of things right now - I always wonder "how good will it get"? I got a bit of a sense from the sufferers that they went through intensive treatment and life is now fantastic and relatively "OCD free". That hasn't been my experience. I have had a couple of relapses, and my road to finding a good therapist has been rocky. Even when I'm not "relapsing" - I have daily OCD struggles. It was inspiring to see Kristen and how much she has improved. She did mention that she still has OCD and always will.

  2. I did NOT know that was happening because I would have loved to see it. Except sometimes when people talk about experiences too similar to mine it causes panic attacks. So I still gotta be a little careful...

    But I was just thinking this week "How do regular people live without deep breathing and inner paecefulness and all those touchy feely things we learn in therapy?!" For me, its yoga. I was trying to teach my husband how to calm down and center and I realized that only about 3 years ago, I had no center. No anchor. No rest stop. No break. Just constant furious demanding motion in my crazy sick brain. I know that I will have this forever and so it is good to hear from other people like us!

  3. Pure O Canuck - I agree! It was inspiring to see Kristen and how much she has improved. Of all the people on the OCD Project, I identified with her the most both in terms of type of OCD and the severity of it. It is wonderful to see that someone can appear to improve so much in a relatively short amount of time. Sometimes I wish that I had had the opportunity to go into intensive treatment when I see and hear about the progress she made! But I have a wonderful therapist, and the work may go slower because I am not spending as much time in treatment, but I have made progress and it has allowed me to work through things without uprooting my life and my bank account!

    Angela - If you're still interested in watching the evening of stories, I think IOCDF is going to post it on their site at some point once they've had a chance to edit the footage. And you summed it up beautifully - constant furious demanding motion. That's how I've lived for so long, and I'm just now learning how to live my life with a bit more peace!

  4. Despite being reminded about this several times, I totally spaced it, but I definitely plan to watch when they post it online.

  5. There is a movie being made that I think is going to change the way people look at OCD cases.

  6. Thanks for posting your situation with OCD at the moment.

    I found out last year that I have OCD type O. I never knew it existed before.

    I have been going to therapy, and having been constantly practicing mindfulness techniques. I feel so much better when I can be mindful and not let my thoughts rule my life. At the moment, even the smallest things such as "What if I don't make it on time?".."What if I have a bad back.."...etc... big and small "What ifs"....

    They seem to be increasing whilst I am beginning to be more mindful. I never knew my life was so affected by OCD...

    By being mindful (feels like being a constant thing just get me back to myself when the OCD comes back) is really helping me the most right now. Though, I do still obsess... I feel hope, because I can do something about it.



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