NOS sucks sometimes

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Often, when a person in diagnosed with *something something* NOS (= not otherwise specified) it means that they do meet some of the criteria for a disorder, but not enough for them to get a “full” diagnosis. As you might already know, I have DDNOS because I meet every criteria except one for Dissociative Identity Disorder. This being “in-between” can be quite hard on me sometimes, because it feels like I don’t really belong anywhere. Sometimes I get this nagging voice in the back of my head saying that I don’t really belong in the DID community, because I obviously don’t have it. Sometimes I can’t help but feel like I have no right to “complain” or even the difficulties I face with my DDNOS because DID is a more severe disorder. It’s silly, I know, DID being a more severe condition doesn’t mean that DDNOS isn’t legit and difficult too. I just can’t help but wonder “where do I fit in in all of this”? I don’t have DID, but I’m not “normal” either. 

Obviously, I don’t wish that I had DID. I just wish that I felt like I belonged somewhere, I wish that I would have a more definitive answer to what is wrong with me than “not otherwise specified”.  I wish that I didn’t feel like I was “in-between”, you know? 

(I really hope that it’s clear that I don’t wish severe disorders upon myself just so that I could fit in somewhere. I also hope that this didn’t offend anyone because that is really not my intention. If it did, please let me know and I’ll delete it.)

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11 thoughts on “NOS sucks sometimes

    brokenbutbeingrepaired said:
    January 26, 2014 at 12:05 pm

    I can understand what you mean; had a conversation with another person diagnosed with DDNOS about this, recently and she said very similar things. 😦

    Here is a link which explains the updated criteria for dissociative disorders http://www.pods-online.org.uk/dsm5criteriaupdates.html which we found quite enlightening and am hopeful that it is helpful for you, too.

      litenselleri responded:
      February 1, 2014 at 8:02 am

      Thanks for understanding! And thank you for the link! I checked it out and it really helped. I told my psychologist about what I’d read and now I’m going to get re-evaluated for DID! We’ll see how that goes. Either way, again thank you very much! 🙂

        brokenbutbeingrepaired said:
        February 1, 2014 at 10:39 am

        Am pleased you found that link helpful 😉

        All the best for the re-evaluation.

        litenselleri responded:
        February 1, 2014 at 11:07 am

        Thank you very much 🙂

    sarahkreece said:
    January 27, 2014 at 11:56 am

    I’m sorry that you don’t feel like you fit, if it helps at all, I hear this a LOT from people when I’m running groups, and it can be about everything! Being the oldest or the youngest, the only woman or man, having a different diagnosis, a different religion, different socio economic background, ethnicity, you name it! We can be so sensitive to our differences when we feel lonely and want to fit in. Sometimes people contact and tell me they’re scared they won’t fit in and I tell them I don’t want them to fit in! I want them to bring their own unique experiences and insights. Having said that, I agree that the online community can be very DID focused in language and assumptions. I don’t find this very helpful. Most people who have some form of multiplicity actually fit the diagnosis of DDNOS rather than DID, because the DID diagnosis is poorly constructed (in my opinion) and groups dissociation in identity together with dissociation in memory. People have come to use DID as a short hand way of referring to multiplicity, which isn’t accurate. Technically anyone with DID who develops a reasonable amount of co consciousness would actually change diagnosis to nos! This poor structure and use of language leaves a lot of people feeling on the margins of the multiple community when in fact they are the larger group! This is why my blog and power work resources talk about the experiences ofmultiplicityand dissociation, instead of the diagnosis of DID. I also question the common understanding of severity, I’ve seen people with DID who function more highly than people with severe anxiety… And people who find their co consciousness completely terrifying and chaotic, while others who learnto navigate chronic amnesia relatively peacefully. I think you’re absolutely allowed to complain about how tough things can be for you! And try not to take to heart the marginalisation implied by an nos diagnosis, it’s a daft way of categorising experiences and has little bearing on the reality of people’s pain or needs, and certainly not in their value as members of a community! 🙂 xx

      litenselleri responded:
      February 1, 2014 at 8:10 am

      Thank you so much for this comment! It was very reassuring and comforting to know that this is a common thing.. I’m gonna come here and read that comment every time I feel insecure about stuff like this 🙂 Also, keep up the good work with your groups! It is much needed 🙂

        sarahkreece said:
        February 1, 2014 at 9:32 am

        You’re most welcome! Sorry it was so long, as I getting into my second paragraph I started thinking this should probably be a blog post and a simple link Lol!

        litenselleri responded:
        February 1, 2014 at 11:08 am

        Oh, don’t worry about that! You can write as long or short replies as you like, I’m thankful either way 🙂

    sarahkreece said:
    January 27, 2014 at 11:57 am

    *peer work, not power work Lol! That was a long comment for my poor phone! 😉

    manyofus1980 said:
    March 28, 2014 at 9:10 am

    It didnt offend me and us. I know the nos sucks. I feel like that bout our ed. We have traits of both eds anorexia and bulima so we are nos instead of one or the other. Sucks to be honest. I hope you are ok. I am sorry this reply is so late I am waaay behind on blog entries! XX

    manyofus1980 said:
    March 28, 2014 at 9:13 am

    I don’t know if my last comment showed up, but I we want to show our support! You didn’t offend us at all! XX

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