OCD and Identity

jail cells

I’ve previously written about some of the factors involved in recovery avoidance in OCD. Often those with the disorder are fearful of giving up rituals they believe keep them and their loved ones “safe.” Even though OCD sufferers usually realize their compulsions do not make sense, the terror that comes with losing what they perceive as control over their lives can be so real that they choose not to engage in Exposure and Response Prevention Therapy. They are afraid of getting better, of living a life without the “safety net” of OCD.

My friend Jackie over at Lights All Around recently posted about what she calls OCD Stockholm Syndrome, where hostages (OCD sufferers) side with their captors/abusers (OCD). While I’d known those with OCD might find it hard to leave their disorder behind, it had never occurred to me that they might not want to rid themselves of this horrible disorder. To me it is so counter-intuitive that I never considered it. Why would anyone want to live with an illness that robs them of everything they hold dear?

It’s hard for me to comprehend, but then again, I don’t have OCD.

Maybe because living with OCD is the only life many sufferers have known, it might feel, in a way, comfortable. It is like family (though a dysfunctional one, at best). No matter how much our family might annoy us, and no matter how much we might even despise some of our family members, we still love them and want them around. Is this same type of love/hate relationship common with OCD?

Also, there is no question we are all shaped and influenced by many different factors in our lives, including our illnesses. Do those with OCD believe they won’t be their real selves if their OCD is under control? For those who are able to see their obsessive-compulsive disorder as separate from themselves, I wouldn’t think this would be an issue.Ā  But maybe it is. Maybe those with OCD believe not having their disorder as an integral part of their lives might change their true identity. To complicate matters more, it might be difficult for sufferers to even know what they believe. Are their thoughts their own or is it their OCD talking?

In my son’s case, getting treatment for the disorder is what allowed the real Dan to emerge. I have never heard from anyone with obsessive-compulsive disorder who felt their true self had been compromised after ridding themselves of OCD. Indeed, it is just the opposite. With OCD on the back burner, they were finally free to be themselves.

I’d love to hear your thoughts….

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34 Responses to OCD and Identity

  1. This is a hard one for me to sort out. I can understand the concept of OCD-related things being familiar. I can understand not wanting to get fully better because you might lose the need of having a therapist or doctor, and that is scary. I can understand the fear of giving up rituals for fear of something terrible happening.

    But I cannot understand wanting to hold on to the obsessions and compulsions, of not wanting to be rid of them. They might be familiar to me, but the anxiety and frustration and pain associated with them? Be gone, already!

    With that said, I do wonder how I would be different if I didn’t have OCD. I would have had different experiences. Would I think differently? Would I have a different personality? As frustrated as I get with myself sometimes, I wouldn’t want to be anyone but me. I don’t mean that in a conceited way–I’m not better than anyone else. But I am me. And that’s OK. So if I could have OCD taken magically away, would I? I don’t know. But if I could have the SYMPTOMS of OCD taken magically away–yes!

    I don’t know if this comment makes any sense. As you can tell, I’m still working on this. šŸ™‚

    • Yes, your comment makes a lot of sense to me, Tina, and I really appreciate your input. It makes sense that you would not want to hold on to your obsessions and compulsions because they bring you anxiety and pain. As for magically erasing OCD, that’s unlikely to happen šŸ™‚ but I understand what you are saying about feeling ambivalent about that as well……Thanks for sharing!

  2. time2cher says:

    I never really thought of the “after” person or personality either as a parent, but my daughter is hopefully going to be starting therapy soon that we are optomistic and hopeful about but I must tell you, her thoughts are just that…she said she doesn’t remember who she was before OCD and is afraid of who she will be after. She doesn’t remember how it feels tobe happy and to just “be”. That made us all think, all wonder, but we can’t wait to see. I agree with Tina to have the symptoms go away would be wonderful and freeing. I hope she is able to free herself and whatever identity comes with it as long as she is happy again:)

  3. Yes, that’s exactly it– I was scared of what pieces of ME would leave with the disorder. Would I still be Jackie? Would I still have the same personality?

    And the answer is “mostly yes, a little no, but everything is better.”

    šŸ™‚

  4. DancinCthulhu says:

    I would love to be rid of my OCD. I have struggled with it as a child, and it kind of eased up for a long time, but came back during my pregnancy. My intrusive thoughts constantly make me want to scream, cry, or throw up. I am terrified I am going to turn into a monster because of them, and my husband is constantly having to talk me down because of the anxiety it causes me. I am constantly second guessing myself, worrying the thoughts I have concerning my child are my own, and it absolutely sickens me.
    If I could be rid of it, I would in a heart beat. I don’t care if my personality would be different without it, because if anything, I believe my personality would improve because of it, becoming more optimistic and confident.

    • Thanks for sharing, DancinCthulhu. I can sense how much you’re tormented by your OCD just through your comment. I hope you can find a therapist who specializes in treating OCD so you can start ERP Therapy. OCD is treatable! Good Luck!

  5. eventer79 says:

    I just wanted to say I just discovered your blog and am definitely bookmarking it for future reading!!! I’ve struggled with depression, OCD, and ADD for over a decade and am experiencing a stress-induced explosion. Yes, I am over-researching as a result, ha. But I have learned a lot of new and very useful things that have given me a much better understanding of why I do some of the maddening things I do!

    I had never been given a proper “diagnosis,” I just managed as best I could. Well over a decade later finally I have found some professionals who are on the ball. I don’t know how it will all go, but I figure I have nothing to lose. It feels good, though, as if a door has been opened on a whole new perspective of my own self; it’s almost a sense of relief that perhaps I am more than the roller coaster of ten thousand thoughts and emotions that whiz by every minute.

    • Thanks so much for commenting and bookmarking my blog (you can also sign up for delivery by email if you’d like). I’m so happy to hear you have found appropriate help, and are beginning to understand what you’ve had to deal with all these years. Good luck as you move forward and I hope to hear from you again!

      • eventer79 says:

        Aww, thanks for your thoughtful reply! I have been medicated since 2002 for depression, which has helped a lot. But enormous stressors can push a person back to that edge they swore they would never visit again. I have always maintained that one of the most painful parts of mental illness is the part where you feel so very ALONE. Finding a community of others in any circumstance make a person almost giddy!

      • I agree. There’s not much worse than feeling you are all alone with your illness or disability. So glad you found us!

  6. mommaoak says:

    I’m de-lurking for this one. šŸ˜‰

    I’ve recently had great success with medication to control severe OCD and there have been times when I’ve said I miss it. I’ve fallen into depression as a result.
    I know it’s crazy because I was such a slave to the disorder but at the same time it kept me going. Now I feel lost with time on my hands and I have no idea what to do with it.

    • Thanks so much for sharing, mommaoak. Your comment is a real eye-opener and shows how OCD really can become your life. I’m sorry you are having a difficult time but it’s still great news that your OCD is so much better! I hope you have a good therapist who can help you learn how to move on from the disorder and enjoy your life!

    • 71 & Sunny says:

      Hi Mommaoak. Yes, extra time on our hands is an interesting problem after recovery. I’ve tried to fill that time with things that I enjoy and am passionate about. For me, it’s volunteering at my church. I’ve taken on several ministries that now keep me quite busy (but not to the point of adding too much stress). I try to do things that support my life values and goals, as my psychologist suggested. Hmm, you just gave me an idea for another post! Good luck in your recovery.

  7. 71 & Sunny says:

    Great post, Janet. This was an issue for me, and I know for others as well. When your mind is filled with all kinds of distortions, well a lot of your thinking doesn’t make too much sense. You just gave me the idea for my next post! Thanks!

  8. C says:

    Hey Janet, I’m new to the OCD blogging thing and ran across your blog. I have straight-up contamination OCD (basically like a phobia) that started when I was nine and I am now a whopping 25-year-old old lady šŸ˜‰ I think part of the issue here about wanting to resist treatment–is the fact that it is truly a LIFESTYLE (as sad as that sounds). The only analogy that I can think of is something like wifeswap–completely changing your life (even though that is just temporary and frankly, a stupid show). I don’t think anyone with truly debilitating OCD–take me for example sobbing to my parents on the phone because I couldn’t go home for the holidays due to OCD or a morning when I got up at sunrise to go get shower supplies to scrub my skin in a ritual shower to get “clean” that sometimes I would burst blood vessels–would ever say, “yes, I want this! I love being miserable!” I think the way OUT of OCD to each person who has not yet experienced it and a dark, terrifying, unsure full-of-cobwebs road that is unique to each of us. Healthy people have that insight–to know that road will scientifically lead to a better life and it will be okay–but we have a hard time fully understanding that.

    For those out there like me, most of my life has been spent with OCD and many of my recent years, 18-25, it has been my #1 priority. Truly, because if OCD is off kilter, it’s harder for me to function. Having to go through treatment and go through ERP/CBT (aka cobweb road), something that I already knew alot about, was a VERY difficult commitment…but really has improved my life SO MUCH.

    Check out my blog I created to record my battle out of this sucker to help other OCDers
    http://www.ocdtothenthdegree.blogspot.com

    • Hi C, I will definitely check out your blog and thank you for sharing. Your comment really gives those of us without OCD a better understanding of how difficult it can be to move forward with treatment. I’m so glad you were able to, though, because as I’ve said before, I’ve never heard anybody say they regret going through ERP Therapy. I wish you all the best as you move forward in your fight against OCD!

  9. Nancy says:

    Just found this blog. My daughter just enetered a partial outpatient program to learn how to do ERP. I was thinking of blogging about it (although my record on actually writing something on a regular basis was spotty at best). Then I found your blog. Now I don’t have to write! Thanks for doing this. I’ll just read along for now.

    • Happy to have you read along, Nancy! That’s great news that your daughter is moving forward with treatment. I wish you both all the best and would love to hear how she progresses.

  10. Thought provoking post. I definitely see myself as separate from my OCD. However I have always felt that I was probably predisposed towards the condition because of the type of person I am. Therefore if I am who I am I have to accept the OCD as part of my being.

    However this does not mean I haven’t fought to recover and am now successfully living largely OCD free. Interestingly it was when I was on medication and still on the journey to recovery that I felt part of me was diminished.

  11. Deb says:

    Janet, this blog is helping me so much at a time when I need it. Thank you. Identity is an issue I have thought about a lot recently. I have asked my son often if he is in there. Occasionally I see him and I actually recognize it by saying “Hi Matt… haven’t seen you in awhile!” I am so glad when it happens because I see less and less of him and more and more of OCD.

    I haven’t yet figured out my son’s OCD identity. His is not pure contamination, or ordering, or rituals.

    Matt’s OCD is very strange. He is able to shake peoples hands, dig in the dirt and pet the dog, but is deathly afraid of hand sanitizer, anything that touches the outside of a cleaning product bottle, pencil erasers, bandaids, and most recently his own underwear which he is changing at least 5 times a day. If he is afraid of something, his pattern is to transfer the fear to something that helps the original fear. The best example of this was an over the top fear of getting poison ivy. His Poison Ivy fear switched to a full blown phobia of “Technu” the poison ivy prevention lotion. He is absolutely terrified of the stuff and anything that comes in contact with a bottle of it. His other pattern seems to be if he has any success or any happiness he will find an irrational fear to come and ruin it. On his graduation night instead of celebrating his success he became terrified that someone may have put fertilizer on the grass we walked through to get to the car and was unable to eat the cake we bought to celebrate.

    As for parents and their own sanity, I am beginning to lose it more and more often. I’ve become a screamer and thrower now.( My mother says that my “Italian” is coming out. ) I used to get sick to my stomach and upset with his OCD, now I get that too, but I have added anger. IN the past month I have thrown his mattress and box spring out on the front lawn because I was tired of his “bed contaminating the world” fears. Last night after a particularly tough OCD day, I reached my hands into his icecream bowl and threw his ice cream in his face because he asked me some irrational question that I can’t even remember what it was. I caught myself screaming at him earlier in the week because he had an irrational reason for not listening to the relaxation tape I bought him. I actually screamed at the top of my lungs that he needed to listen to this tape so he could relax. After recognizing the absurdity of a screaming mother hysterically yelling about relaxing I decided to take the tape back to the store to get my money back. How do we as parents keep our own composure against this horrible disorder that has stolen our child’s identity? It is as if my son was kidnapped. My yelling and screaming is at the kidnapper.

    (I wrote too much, but somehow this is helping me sort out my thoughts and feelings. Thank you )

    • Your description of your son’s OCD sounds similar to almost all the cases of the disorder I’ve come across. What I mean by that is that OCD just never makes sense! Anyone with contamination issues will tell you there are things they are deathly afraid of, and then there are other things that don’t bother them. For example, someone might be terrified of touching doorknobs, but have no problem going through the garbage. That’s just how OCD operates.
      As far as your losing your patience goes, I applaud you for your honesty. Believe me, I know how hard it can be, and parents are only human. I also think it’s great that you realize you are upset and angry over your son’s OCD and not your son. That being said, you also realize how counter-productive it is to act the way you describe.
      I believe your son is in treatment? I would strongly advise that you and other household members meet with your son’s therapist (regularly if possible) to discuss how you can be as supportive as possible, in the right way. OCD is absolutely a family affair, and that has been one of my complaints about treatment from the beginning, that families are often excluded. The more you understand what is going on with your son and how you should act/react to his OCD, the better off you will all be. I hope this helps a little…….maybe some readers have suggestions as well.

      • Deb says:

        Yes thank you he is in treatment 2 times a week. I now meet with the doctor for a few minutes each session with a question prepared ahead of time. I also bring with us an item that is giving Matt particular trouble. Friday I am bringing along his contaminated chair. I think it’s important for a parent to be there to add a dose of reality. My son is famous for telling the Doctor that he is really doing much better….after all, his fears make sense to him so they must be normal. He also wants the Doctor to be pleased with him so he seems to tell what the Doctor might want to hear.

    • Grackle says:

      “Last night after a particularly tough OCD day, I reached my hands into his icecream bowl and threw his ice cream in his face because he asked me some irrational question that I canā€™t even remember what it was.”

      I cannot imagine how stressful it must be to have a child with OCD, but as an OCD sufferer myself I have to tell you that had my mother done that, it would have really screwed me up and set me back. šŸ˜¦

  12. Oh, I think that’s great, Deb, that you get to go in to the appointments, even for a short time. It’s not uncommon for those with OCD to not be honest about how they are doing (I talk about that a bit in this post: https://ocdtalk.wordpress.com/2013/04/01/using-evidence-based-therapy/). Also, I just wrote this post for Beyond OCD (http://beyondocd.org/blog/post/ocd-the-road-to-recovery) which talks about honesty in therapy also.
    It sounds as if you’ve got a decent support system in place……maybe Matt’s therapist could carve out some additional time for you to talk about your concerns, as well as help you figure out how to deal with the anger and frustrations that come with living with a loved one dealing with OCD.

  13. Julia Macdonald says:

    I’ve never been properly diagnosed with OCD, probably greatly because of this sort of Stockholm syndrome aspect of the illness, so I cannot be sure I am a good source for an explanation, but I believe I understand what is being described here.
    OCD is different from other disruptive mental disorders, because as you said, it really doesn’t feel like it exists independently from your personality. It isn’t like a general feeling (such as anxiety) or thoughts that can be clearly associated to it (such as depressed thoughts), so much as a thinking pattern. Everything that my brain processes passes through a sort of OCD filter. It makes it hard to differentiate lucidity from OCD, since it really can’t be pinpointed, it’s too omnipresent, every thought has a sort of ‘OCD flavour’ to it. It becomes hard to imagine your thoughts not going through this sort of automatic structuring.
    Another reason OCD is hard to let go of is the same reason as any control related disorder, we don’t associate ridding ourselves of OCD with freedom as simply as everyone around us does, without the rules we set for ourselves, we see ourselves sort of losing our footing, cutting all ties holding us in place and just floating through space without any logic or structure. It’s scary. And unappealing.
    I would compare the relationship more to an abusive relationship, where objectively you can see how it’s hurting you, and you can say you wish you didn’t have this attachment to the person, but if presented with a pill to magically stop needing and caring for them, it’d still be difficult to take.
    Speaking of “pills for not caring”, that’s sort of how we perceive medications commonly used to treat OCD such as Prozac. In our mind, once we take them, everything around us will be a mess, and all wrong according to our OCD standards, but we just won’t care. We’ll be numb to all the “bad” and backwards things around us. Again, not appealing. You’re sort of telling a perfectionist that they’ll do less good work, but it won’t matter cause it’ll reach everyone else’s standards.
    My final reasoning might only be because the mixture of OCD and ADD gives me the sort of impression of invincibility associated with ADD, as well as intense the perfectionism related to OCD; this leaves me in this sort of state where I feel that if I can achieve anything if I obsess over it hard enough. Now that can sound positive but really all it does is make me a lot less efficient and functional, and keep me in a constant state of disappointment and perceived inadequacy. However, even if I know this, the “capabilities” of obsession my OCD give me seem like the only way I will ever achieve the things that I want, and feel like I need, to do.
    To summarize, yes OCD does feel very deeply ingrained in one’s personality, because of it’s omnipresence in shaping thoughts. I wouldn’t describe it as comfortable because it is still very stressful, but it is true that there is fear associated with giving up the way you’ve always been. OCD makes us feel in control, losing that control is difficult to accept. The sort of mental “chains” of OCD that are perceived as tying us down, can feel more like they’re hanging us from the edge of a cliff. Not something you want to break. The treatments just sound to like numbing ourselves down to everyone else’s level of not caring. And finally, despite constant proof of the opposite, OCD still feels like the only way to achieve great things.
    Whatever the reason, I still hide my obsessions in fear of people trying to keep me from doing them.
    Hope this helps! I’d love to hear if anyone with OCD can relate to all this.
    Cheers,
    Julia

    • Hi Julia, Thank you so much for all your insight and I understand everything you say (you explain it so well!)
      I guess, for me, the bottom line is, are you happy and satisfied with the way your life is now? Are you content to live the rest of your life as you are now?
      I know, for my son, the answer was a resounding NO and maybe that’s why he experienced very little recovery avoidance.
      Wishing you all the best as you deal with your OCD.

  14. urladybird says:

    Hi, I’m so glad to have come across your article. My partner has sever OCD and started therapy about 3 months back.
    Recently we have come across the subject of him fearing of loosing his identity.
    I can understand this, as he has spent 50 years in his OCD life and is only just now learning about the severity and the space OCD is taking up. His therapist is calling this space his OCD brain and yes, I am myself always surprised at how OCD can mimic personality.
    As a partner I am currently feeling that explaining the difference between the two identities and maybe even writing two lists, one for each could raise awareness. However, the list writing might again be OCD in itself. And I am not certain if putting things in writing would elevate the symptoms.
    The other side is, that my partners brain seems currently to a large extent his OCD brain, which in itself (I feel) does not allow him the space or time to actually become aware of his own personality.
    I call it an 88 situation. It makes logical sense on understanding why he reacts in his OCD way and it makes logical sense to want to change the thought and behaviour process.
    Maybe ultimately it will be making a very conscious choice and then sticking to it for a little while to allow some change in thinking to take place.

    • Thanks for sharing and your partner is very lucky to have you on his side. I do think if he is getting good therapy the OCD will eventually lose its power and it will be easier for your loved one to be his real self. This is something that can be discussed with his therapist as well, but as you say, you want to be careful that “figuring it out” doesn’t become a compulsion.
      Wishing you both all the best!

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