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Dissociative Identity Disorder Video: My Diagnosis

Yesterday I talked about the Dissociative Identity Disorder diagnosis and the vital role clinicians play in making that diagnosis. One of the reasons it’s important to talk to a therapist if you think you may have DID is that dissociation by nature impedes awareness. Most people can’t see the spot between their shoulder blades without a mirror. Similarly, most severely dissociative people aren’t able to clearly recognize the symptoms of DID and the extent of their problem without the help of a skilled clinician. In fact, the diagnosis often comes as a shock. Today I’d like to share with you a typical diagnosis story – my own.

Photo by Esparta
Photo by Esparta

A Dissociative Identity Disorder Diagnosis Doesn’t Change Who You Are

Receiving the diagnosis of Dissociative Identity Disorder is often so confusing and provokes such internal pandemonium that newly diagnosed people struggle with identity confusion like never before. They feel like a different person because of the diagnosis. But as Julie W. says in Multiple Personality Disorder from the Inside Out:

You, as a system, are not different. You, as a group, have lived, survived and functioned for virtually your whole life. This diagnosis makes you feel differently about yourself, but you haven’t changed. You may choose to change your lifestyle/habits/friends, etc. but your life won’t change of its own volition. You are what you have always been.

I had an exceedingly difficult time in the first few years after diagnosis. Watch the following video to hear more about how the Dissociative Identity Disorder diagnosis affected me.

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15 thoughts on “Dissociative Identity Disorder Video: My Diagnosis”

  1. I was reading about Dissociation because I started to feel unreal. I always feel more real when I’m dreaming because an idea is absolute it doesn’t care where it cames. When I awake i just start doing my activities, like i was see me on a dream and ocasionaly i forgot where I’m going and i realized that i was doing stuff with even notice.
    That’s the reason that i like to sleep a lot because when I’m dreaming i felt more alive is the being i want to be but in the real world I can´t because people betray, lie and I don’t want to change who am I. I felt a lie when I’m awake. Sometimes I just don’t why i have to do the same things.
    Does anyone, knows what I should do?
    Thx

    1. Hi Miguel,

      Your description of feeling unreal reminds me of depersonalization, one of the five primary ways dissociation alters people’s perceptions of themselves and the world around them. I wonder if this description of depersonalization is similar to your experiences?: http://www.healthyplace.com/blogs/dissociativeliving/2010/09/what-is-dissociation-part-1-depersonalization/

      Have you considered speaking to a therapist about these feelings?

  2. @Glen: please feel free to contact me. Thank you Stephanie for linking to my site.

    Holly: Thank you for making this video. I agree with a lot of what you say. Destabilization following a diagnosis is common to many psychiatric diagnoses. But, yes, I understand DID can be particularly upsetting. This is why so many are first diagnosed as DD-NOS. I think for good reason. DD-NOS acknowledges that someone is experiencing dissociative symptoms (many severe), but without giving a full blown DID diagnosis. There are issues associated with a DID diagnosis. One of them is what you mention about systems being thrown into chaos. I think it’s always good practice to tread lightly… Because being Dx DID is like being put into a vortex.

    The problem is that many think DD-NOS is not really anything to hang their hats on. This is not true.

  3. Hi Holly,

    I can understand that people who don`t have DID can think it would be so obvious to those of us who have it, that we have it. But that isn`t the case for others, and certainly wasn`t the case for me. I went and sought therapy when I was 37 because I just couldn`t cope with life. I had huge mood fluctuations and felt like I was always forgetting important things. I knew I was a horribly inconsistent parent and felt a failure. I was also in what seemed like a constant state of panic.

    So off I went to a psychiatrist to learn skills about how to handle my life better. But nowhere in my sessions did I ever talk about the abuse I suffered as a child. I didn`t know my psychiatrist well enough yet to trust him with this information, but my alters were getting sick and tired of me avoiding it. So after a few months they wrote my doctor a letter telling him I was a coward, and needed to start talking about these things or I`d never get better. Ironically it never entered my alters` heads that their very existence was a problem at all. I mean they were my protectors. Their job was to save me when I was overloaded, by taking over and pretending to be me. And they had done this for many years. Their job was to be covert, not overt. I hid in the background while they came forward, so they needed to be undetected, otherwise the sanctuary they provided would be exposed and I would be vulnerable.

    Ironically, my psychiatrist was very interested when several different personalities started to communicate with him. And his focus became them. This totally threw them into a panic and a couple started threatening him, saying that this system was only meant for me, and he needed to go away now and not stick his nose in where it wasn`t wanted.

    They did not see themselves as a “disorder”, but rather my salvation. So to be referred to as such, greatly surprised and offended them. Also when they heard of the concept of “integration” they became terrifed my doctor was trying to kill them.

    Apart from my alters being rattled, I Kerri was totally blown away by all of this. I mean the first time my doctor tried to read a letter out to me that my alters had written, I stuck my fingers in my ears like a child and yelled bla bla bla bla bla. Until I drowned him out and he stopped. Because this whole DID thing, had to be a mistake. I saw the movie Sybil and that was just not me.

    Over the years I have wanted to storm into his rooms again and again and say ” this is crap, I must have made it all up, I must be a pathological liar because this just can`t be true”. But deep down inside I knew I wasn`t lying at all. I stayed in denial for about four years, until I started reaching out on the internet and came across people who were going through similar things to me. And this above all else has helped me come to terms with who I am. So I cannot emphasize enough how people like you Holly have made a difference to people just like me. Thankyou very much!!

    1. Hi Kerri,

      I want to thank you for sharing your diagnosis story. I can’t tell you how powerfully it resonates for me. You have articulated so beautifully the struggle that I and so many others with DID had in 1) figuring out what was wrong in the first place, and 2) dealing with the impact of diagnosis. I really wish I could have read it five years ago.

  4. Glen,

    I do know of one website run by a man diagnosed with DID: http://www.mindparts.org/

    Holly,

    Recently more than ever I’ve needed to hear the message in your video. I was officially dx’d with DID in October of 2008, but realistically diagnosed in December ’07. Over 2 years and sometimes I feel just as lost, scared, and overwhelmed as I did the first time my therapist ever suggested the diagnosis. I still argue with her sometimes that, surely, it MUST be something else. Maybe psychosis, or Borderline, or Bipolar disorder. I often feel like I’m suffocating under the weight of mental health management. So thank you for saying how long it took you to come to terms with it and letting me know it gets better. It’s reassuring to know that there isn’t some expectation that I should be “fine” and “well-adjusted” two years later; it’s okay if it takes some time.

    1. Hi Stephanie,

      There are those people for whom the diagnosis is such a relief – finally they have an explanation for what they never understood – that accepting it and moving into healing is a fairly quick process. But I’ve met more people who have an experience similar to mine and yours. Diagnosis effectively shines a spotlight on something that was never meant to be seen. Something that, in fact, was designed specifically for the purpose of hiding information. It simply wouldn’t do for anyone to know about this thing that hides stuff – that completely undermines the purpose of DID. So a diagnosis is often terribly frightening and destabilizing. And it can take a very long time indeed to regain equilibrium. I’m not exaggerating when I say it took me five years to come to terms with my diagnosis. I hope for your sake it doesn’t take you quite as long. But if it does, know that you’re not an anomaly in that regard.

      Hmmm … Bipolar. I never tried that one. Borderline Personality Disorder was my go-to disorder when making my case against DID. It was never much of a case though as I don’t meet any of the diagnostic criteria. I gave it a hearty try though!

  5. Thank you, Holly.

    I’ve been reading and studying what information is out there, and there are certainly many pieces that ‘fit’.

    What I do find further puzzling is that there seems to be very few men diagnosed, and very little information on men with the disorder.

    I don’t know if it’s an issue of men not talking (I can certainly understand that, to me any disorder feels like a weakness, and we learn as men to not show weakness, etc.) or if we are somehow less prone to this than women.

    Do you know of any sites offering information for men (or about men) that may have DID?

    I hope I’m not out of line in asking for some help here, there’s just so few resources I can find and you seem quite sincere,

    Thank you,

    Glen

    1. Glen, I’m really glad you brought that up. It’s true, far more women are diagnosed with Dissociative Identity Disorder than men. But few experts (actually, I can’t even think of one) think the imbalance is because more women have DID. It’s widely believed that most men with DID simply haven’t been diagnosed. Why? Like you pointed out, men tend to be less inclined to seek treatment. I also personally believe that we as a society have different expectations of men, and those expectations cloud our ability to see how they are wounded.

      I don’t know of any sites specifically geared towards men with Dissociative Identity Disorder but I highly recommend visiting the Dissociative Disorders homepage here on HealthyPlace if you haven’t already – http://www.healthyplace.com/abuse/dissociative-identity-disorder/types-symptoms-causes-treatments/menu-id-57/. There you’ll find links to articles, interview transcripts, and videos about DID. I also always suggest visiting Sidran.org – the Sidran Traumatic Stress Institute’s website (click Resources) – and isst-d.org – the International Society for the Study of Trauma and Dissociation online (click FAQs). Both sites offer a wealth of information about Dissociative Identity Disorder.

      I’d also like to recommend a few books, all of which you can likely find at your local library:

      -The Dissociative Identity Disorder Sourcebook – This is always my first book recommendation to people who are seeking to learn more about DID. It’s a fantastic introductory resource and the author, Deborah Haddock, addresses both men and women with the disorder.
      -Multiple Personality Disorder from the Inside Out – This is a collection of writings by people with DID. I recommend this book partly because one of the best ways to learn about DID is to hear from people with it; but also because though there are more female contributors than male, male voices are represented.
      -The Stranger in the Mirror – This book by Marlene Steinberg and Maxine Schnall is highly accessible. It breaks Dissociative Identity Disorder down in a way that’s easy to understand. Furthermore, there is a short chapter titled “Men, Abuse, and Dissociative Disorders” wherein the authors address the imbalance of diagnosis in men and women.

      Lastly I’d like to reassure you that your questions are the opposite of out of line! Please don’t ever hesitate to ask questions. Sharing information is vital to increasing our (yours, mine, everyone’s) understanding of Dissociative Identity Disorder. And I’m genuinely grateful to be a part of that.

  6. So, how often is this misdiagnosed?

    For 15 years now I’ve been labeled everything from PTSD to Borderline personality to Schizophrenic … I’ve tried therapy numerous times with mixed results (one time therapy seemed to cause me to “break” further and hospitalize me). 2 psychiatrist, 2 social workers and 6 psychologists later I’m still a mess… though somehow still here.

    I’ve seen a new therapist now… not sure how I even ended up in her office, to be honest… but made an appointment. After two sessions she’s suggesting this diagnosis to me based on everything I’ve told her… But I just can bring myself to think I’m anything other than both different and broken…

    1. Hi Glen – thanks for your comment.

      People with Dissociative Identity Disorder often spend many years in the mental health system before being diagnosed properly. You mentioned Borderline Personality Disorder and Schizophrenia, two of the most common misdiagnoses those with DID receive. Part of the reason DID is difficult to spot is that, like I mentioned in my video, it’s designed to go undetected. However, there are diagnostic tests that, when administered by an experienced clinician, are very effective.

      I understand your reluctance to believe what your new therapist says, particularly after having been diagnosed with so many other disorders in the past and getting nowhere. And though I can’t tell you how often people are wrongly diagnosed with DID, I suspect it happens far less often than the reverse.

      What helped me come to terms with my diagnosis was information, information, and more information. I saw a lot of therapists, did a lot of research, and made sure I was properly tested. It was a long, hard road and quite frankly, I think I made it harder than it needs to be. Some of the best advice I ever received was from Dr. Don Fridley, President-Elect of the International Society for the Study of Trauma and Dissociation, and I’ll pass it on to you now for whatever it’s worth: “You have the capacity to judge what’s working for you and what’s not.”

  7. Hi Holly,

    Great video. And great point. While I don’t have DID, I think lots of mental illness get worse after diagnosis. Being told you have a disease is horrific, particularly if it’s going to be with you forever, like so many mental illnesses.

    And while I’m sure you’re right, DID doesn’t want to be found, I don’t think many other illnesses do either. Depression hides. Mania is intellectualized. It’s hard for anyone to look in the mirror and see that new aspect of oneself looking back.

    Thanks for bringing up the point. It’s something I think a lot of people wouldn’t think of.

    – Natasha

    1. Hi Natasha,

      Thank you! It makes sense, I suppose, that the symptoms of any mental illness would be exacerbated by diagnosis if for no other reason than it increases awareness of those symptoms. And I hadn’t thought of other mental illnesses going incognito. Because Dissociative Identity Disorder is a hiding disorder – it’s purpose is to hide information and awareness – it’s difficult to detect. I also have Major Depression, and I’ve never thought of it as having any kind of purpose. I’ve considered it more of a software glitch. However, it was difficult to detect too. So you make a good point – maybe Depression hides too.

  8. I wasn’t really sure if I was noticing things more after I was diagnosed or if my symptoms were worse. Maybe both.
    It does seem that since I’ve accepted it, it is harder. I hope that changes. I can’t use my old vices anymore. I could shut things out very easy & it is not that simple anymore. Staying present & walking through the feelings…actually feeling them is really hard.

    1. Hi Lenore,

      Thank you so much for commenting. I really relate to what you said. I’ve found that, since being diagnosed, I am not able to compartmentalize certain things as easily. Something simple like tuning out noise, for instance, used to always be as easy as breathing for me. Now there are times when I’m totally incapable of tuning things out. It’s as if – or maybe it simply is – receiving the diagnosis increased my awareness a bit.

      Still, as uncomfortable as that can be, it’s ultimately a step in the right direction. But I couldn’t agree more – staying present and feeling the feelings is very hard.

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