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When I was first diagnosed with OCD, I told some people about it—friends and family, mostly. And when it seemed appropriate, I’d tell a coworker. But it wasn’t until a couple years ago when I got a book deal that I started to tell everyone.

Maybe I’d bring up the book myself, or maybe my husband or a friend would, but whenever someone would ask, “What it’s about?” I found myself first answering with “Well, I have OCD…” before explaining that it’s part memoir, part self-help guide for teens and young adults with OCD. It’s my way of answering the follow-up question before it needs to be asked — “What makes you qualified to write it?”

I’ve said “I have OCD” over and over and over again, and then one day I thought, “Wait. Do I?”

Don’t get me wrong. My diagnosis was spot on. I don’t question that. But I’ve been doing so well that I started to wonder what it means to “have OCD” when you no longer obsess all the time. There’s no cure for OCD, but people can conquer it. I consider myself a success story, in fact. So is it wrong for me to keep saying I have OCD if I no longer struggle with it?

I think the answer is that I do have OCD, but I no longer obsess. I’ve overcome the disorder, and I’m not ashamed of the label. I can wear it like a badge of honor.

In some ways OCD is always lurking. Doubt still creeps in, and I have to be aware of how to handle bad thoughts. I’ll be honest — I am afraid of what lives in the deepest corners of my psyche. I do worry that it’s just dormant, just hiding temporarily, ready to pounce in my weak moments.

But I am ready.

I’m armed with the right tools now, but that doesn’t mean I think I can just stop my medication or stop working at it. I can’t forget where I came from. I can’t pretend I’m a person who has never been brought to my knees by obsessions.

Readers: We are curious to hear what you think: Do you still tell people you have OCD, even when you are no longer symptomatic?

28 Comments

  • Sheila Cavanaugh

    I tell people because I think it’s important for current OCD sufferers to know that there is hope and a mostly “normal” life to look forward to after the proper treatment and medications for OCD!

    Reply
    • Alison Dotson

      For sure–and it’s also important for people who DON’T have OCD to see someone with OCD living life, going to work, paying bills, all of that. I often tell people about my OCD to make the point that you never know what someone is going through. A person may “look normal” but have a disorder.

      Reply
  • […] minted president of OCD Twin Cities…But I considered it a question worth exploring. Read my latest blog post for the International OCD Foundation and weigh in in the comments […]

    Reply
  • I still wear my “I live with OCD bracelet,” even though my OCD is managed. I wear it so that people will ask me about it, and I can raise awareness and education and also show that mental illness doesn’t have to be hidden. One of my favorite quotes is from It’s Kind of a Funny Story, and it is “Life is not cured; life is managed.” I like to think of my OCD in that way. I’ll always have to watch out for relapses, but most days it is managed.

    Reply
  • After about ten years of managing my disease very well, I had a major relapse…right when my daughter was diagnosed. It was crushing. I had new and improved intrusive thoughts, so had to come up with new exposures. My daughter was learning to do ERP to. Years later we are both managed very well. But we both tell people we have OCD.

    Reply
    • Alison Dotson

      Oh, I’m sorry to hear about your relapse! But it’s a good reminder to remain vigilant. And I’m glad you’re doing well now! How does that expression go–those who choose to ignore history are destined to repeat it?

      Reply
  • sorelative

    After ten years of remission, I was crushed to have a relapse with new and improved intrusive thoughts. Just as my daughter was diagnosed. We both did our ERP and now we are both well managed. But we both tell people we HAVE OCD. It can always come back.

    Reply
  • Jessica

    My OCD is fairly well managed at the moment, but I still tell people that I have it. Even though I’m not crippled by OCD anymore, it is such a part of me, of my personality, and I’ve had it literally as long as I remember. In a way, it would be odd to say that I didn’t have OCD.

    Reply
    • Alison Dotson

      I agree. I think it’s good for people to see someone with OCD doing well, too. That way people will (hopefully) realize a mental disorder doesn’t HAVE to cripple a person. And it gives others hope that they can get better!

      Reply
  • I never tell anyone that i have OCD but i managed to overcome myself from OCD. i suffred from panic attacks and some obsessions plus anxiety which bring thunder of thoughts in my mind. i have phobia of loosing things and have very low sel-confidence. I am not completely out of OCD but i am workin on it. mediatation helps me alot and i want give thanks to all bloger who write good online blogs which help us to be confident. i have to work hard to control OCD further and i know i will do it.

    Reply
    • Alison Dotson

      Yes, you can do it! Keep working at it. It always helped me to read success stories to remind me that there was hope for me, too. Good luck!

      Reply
      • Amy

        I find it interesting that you have a phobia of losing things! My 5 year old son was just recently diagnosed with OCD, and that is exactly what he deals with. All of his ticks stem from that thought or feeling…that he dropped or lost something. Do you have any advice for a mom trying to help her son? This just started 4 weeks ago and have already seen a therapist.

        Reply
    • Amy

      I find it interesting that you have a phobia of losing things! My 5 year old son was just recently diagnosed with OCD, and that is exactly what he deals with. All of his ticks stem from that thought or feeling…that he dropped or lost something. Do you have any advice for a mom trying to help her son? This just started 4 weeks ago and have already seen a therapist.

      Reply
  • For me, wondering if I really had OCD was an obsession. So was my fear of accidentally or subconsciously intentionally lying. So now, when I wonder, do I still qualify as having OCD? my OCD radar starts sending out warning signals. The easiest thing for me to do now is to jump in while I’m ahead, say I have OCD, and try not to go down the obsession rabbit trail of whether or not I’m being honest. Actually, I still want to claim OCD because it describes well the thinking that I easily fall into.

    Technically, though, I’m not sure how the DSM would rate me now. Perhaps my OCD-like thinking no longer disturbs me enough, no longer takes up enough of my time, to really “qualify.” Of course, the peace of mind is well worth loosing the qualification. So really, I hope I don’t “qualify,” but I still claim the title. It is a very quick way to say a lot about me and what I have struggled with and still do to a smaller extent.

    But I still wonder, which is why I read this blog post.

    Reply
  • Miranda

    Of course! I’m just starting to get over my OCD, and what she has written has really helped me through an attack of anxiety. It doesn’t really matter if the person who has OCD isn’t obsessing anymore and still wants to say they have it. It doesn’t hurt anyone, and it’s just something about that person that they want to share. I don’t think it’s really something that should be worried about. We worry about enough things already.

    Reply
    • Alison Dotson

      You’re right, Miranda! Why add to our worries? And saying we have OCD helps spread awareness, maybe even more so when we’re doing well and no one would guess we have it because we’re not performing compulsions right under their noses. I’m glad you’re starting to get over OCD!

      Reply
  • Audie

    My entire family jokes about me having OCD even though they know it’s really a problem. Being a deaf woman with OCD is not the easiest thing in the world. What I don’t understand is how they could just laugh it off when I’m sitting right in front of them struggling. Right when I’m about to fall and they let me because they don’t know what else to do but brush it off. Is there anyway I could help myself to get better? I could really use the advice.

    Reply
    • Grace

      I’m really sorry to hear this. Support, especially from those we love, can be important during difficult times. Have you ever read about meditation? Many people claim it works wonders for them. I’ve never taken the time to practice regularly, but I hear that once you have gotten the techniques down, it’s a great way to feel centred and calm which would help with the anxiety. Simply practicing “belly breathing” has also helped me with anxiety. You can also read on cognitive behavioural therapy, which you can practice on your own or with a trusted friend. There are different types used for different forms of OCD, but I know one of them is called ERP (exposure response prevention) which is used for people with harm OCD, and probably other types too. Remember during these times just to be gentle with yourself. Your thoughts absolutely don’t define you as a person 🙂

      Reply
    • Alison Dotson

      Hi, Audie. I’m so sorry to hear your family isn’t being supportive. My guess is that they’re so confused by what OCD is and don’t know how else to act. That doesn’t make it any less hurtful, though! Grace is right that ERP is a great type of therapy; it’s considered the best treatment out there for OCD. Even if you don’t engage in it formally, like with a therapist, you can use some of the techniques on your own. The idea is to face your fears and then sit with the anxiety they cause. So if you had a fear of being around dogs, you’d sit in the same room with one and wouldn’t allow yourself to engage in any compulsion that usually relieves your anxiety. Over time your brain is basically retrained and you no longer react with fear when faced with a trigger. It takes time and patience, but it is so worth it. You can also look into support groups, either online or in your community, read books on the topic, and try to connect with others who have OCD. You can email me via my website anytime! It’s alisondotson.com. You can also look into medication if you aren’t taking any already. Take care!

      Reply
  • Christopher A Kelley

    I have Harm OCD and really bad derealization and im not dealing with it so well i was diagnosed maybe 7 months ago .I could really use some type of advice. i just feel so lost because this all happened so fast and i feel im not dealing with it the way i should. i mean i go to a threapist and shes great and specialize in OCD i just could really use advice .

    Reply

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