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Dissociative Identity Disorder Video: Diagnosis and Shame

In my current series, Diary of a Newly Diagnosed Dissociative, I’ve been writing about what I’ve observed to be common emotional reactions to receiving a Dissociative Identity Disorder diagnosis. I say, “emotional reactions,” but I don’t know if that really does justice to the enormous impact a DID diagnosis can and often does have. When I say I was confused, I mean I was nearly incapacitated by confusion. When I say I was afraid and lonely, I mean I was almost paralyzed by fear and loneliness. It’s with that same respect for the degree of overwhelming emotion that I talk to you today about shame.2481237927_bbe12c883f

1/11/05

I’m scared. I’m afraid that I’m worthless and that I always will be. I feel like we did something wrong.

Dissociative Identity Disorder and Shame

As I mentioned yesterday, many people with Dissociative Identity Disorder have felt abnormal all of their lives. There’s often a sense of shame that accompanies feeling so aberrant. And because the majority of people with DID suffered severe, chronic child abuse they can be highly sensitive to shame. What happens when you tell someone who’s never felt normal and is easily shamed that they have a mental illness considered by most to be dramatic, dark, and freakish?

Watch the Dissociative Identity Disorder Video on Diagnosis and Shame

In this video, I discuss the stigma of a DID diagnosis and how it contributes to shame.

Complete Series: Diary of a Newly Diagnosed Dissociative

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Photo by Gillian.

12 thoughts on “Dissociative Identity Disorder Video: Diagnosis and Shame”

  1. I was diagnosed with DID 20 years ago. In addition to that diagnosis, there are about 10 other things as well. They all seem to be blurred. While I have become more aware of the others, there was a time that I would come home to find things that didn’t belong to me, people would see me in publc and tell me about conversations they had with me, also known as Leslie. This was very disturbing. I am now aware of what the others do. I have been told that my eyes and voice change. The one that is here now, driving the body, knows what the others are saying and I think doing. Thank you for sharing this. You are so dead on. Sincerely, Marilyn

    1. Hi Marilyn,

      Thank you for watching and sharing here in the comments.

      I’m inspired by the enormous progress you’ve made – moving from such severe amnesia to experiencing degrees of co-consciousness. That gives me hope, thank you.

  2. I agree with what you say. In the early days, I didn’t know anything about Sybil. But, after seeing it and thinking back, I see a lot of similarities between us. For me, the “myth” was real. Yes, I was always fragmented, but when the diagnosis was made, it was like a total breakdown happened with me and I became incredibly symptomatic much like shown in the Sybil movie. So, I’ve always found it interesting how people want to distance from that portrayal. I’m not sure how much of it has to do with being diagnosed 20 years ago and how treatment is now versus then. I will say I’m glad I’m much more “normal” now!

    1. Hi Paul,

      What I see as the mythology surrounding DID is not that people with it can look like Sybil. We absolutely can. I don’t believe the Sybil Myth exists by chance. Part of the reason the mythology is so adhesive is that it’s based in truth.

      Speaking only for myself, I will say that if there were cameras running 24 hours a day around me people would see plenty of Sybil moments even now, but especially when I was first diagnosed. Like you – and, I believe, like many – I became incredibly symptomatic after diagnosis. That’s what I mean when I say the dx exacerbates the symptoms of DID. But when all you see of a human being is the symptoms of DID, your perspective is so skewed as to not even be accurate anymore. To me, that’s what The Sybil Myth is – an incredibly narrow, and therefore untrue perspective. The reason I say I’m not Sybil is that no one is. No one is the sum total of their mental illness. There’s more to all of us than that.

  3. I’ve never stood in the middle of a fountain as part of my dissociation; I don’t change my clothes with each switch of personality – although, apparently my voice does change sometimes; and I’ve never been violent towards another person.

    It’s difficult enough dealing with the disorder, without misinformation from the mass media adding to the confusion. After the book “Switching time” was released, I was told by a mental health professional that I must have 17 alters – that number even ended up in my medical notes for awhile. If it wasn’t so sad, it would be laughable.

    I still struggle with the shame and confusion surrounding the diagnosis and it’s origins… It helps to read of others struggles and victories, it helps me feel less alone.

    Take care,
    CG

    1. Hi CG,

      “After the book “Switching time” was released, I was told by a mental health professional that I must have 17 alters – that number even ended up in my medical notes for awhile.”

      Boy. I get really irritated with mental health professionals who base their perspectives of DID (or any mental health condition for that matter) on mass media. I mean, the subtitle of that book alone is enough to warn anyone with a serious interest in DID that the content – while possibly entirely true – is shaped to engross and fascinate readers.

  4. Holly- You have once again spoken words that hit me hard and made me think.

    I am not ashamed that I have DID, most people in my life know and are fine with it. I do not smother my system and try to be present consistently. I trust the members of my system to come and go as they please without disrupting my day to day life and they do an amazing job. It is rare that I lose more than an hour that I can not account for later. My system is large (100+) parts and I will not claim to know them all. They each have a distinct purpose and unique character qualities that allow them to do the things they do. Yes- I am even talking about the children in my system. There is a 13 year old that does my finances and an 6 year old that makes business type phone calls. Their age means nothing in terms of maturity.

    Just because I have DID and another person has DID, doesnt mean that I will behave the same way they do. Everyone with DID is not the same. I know several other people that have DID as well, I can look at each of them and see the many different ways that their system operates in comparison to my own. Every system that I have met functions in different ways and on different levels. In some systems I have had the privilege of interacting with there are not children that could or would do the things that the children in my system do. That is okay, and I can just say that their system operates differently. Yet I have been criticized and judged for “allowing” child parts in my system to participate in my day to day life. I have been repeatedly told that because the children in my system are not all horribly traumatized and fragile that I do not have DID. I have also been pressed to create a consistent adult presence for the sake of friends and family. The reality is that when this comes from the average Joe on the street it is hurtful and really makes me angry but when it comes from someone else that has been diagnosed with DID I feel alone in the world.

    I guess I said all of this to say that the shame and misconceptions do not just come from the media and the public but there is also some of it that is formed by those that have DID themselves.

    Dana

    1. Hi Dana,

      “I guess I said all of this to say that the shame and misconceptions do not just come from the media and the public but there is also some of it that is formed by those that have DID themselves.”

      I agree with you. That’s part of why I’m a big proponent of learning about DID from experienced, skilled clinicians in addition to people living with the disorder. Experts in the field of trauma and dissociation play an incredibly valuable role, I think, in part because they are able to be more neutral. Granted, if all I knew about DID came from expert clinicians, I wouldn’t have a very balanced perspective. But if all I knew about DID came from others with DID, with no research or clinically experienced feedback, I wouldn’t have a very balanced perspective either.

  5. What a great video. You are SO right about how debilitating and shameful the Sybil Myth is. I was terrified of myself for a long time because I was convinced that one of my alters was going to kill me, or destroy all of my relationships. I still feel that fear and shame often. Since it’s so misunderstood, there is such a huge risk of “coming out” to close friends that the fear of rejection is overwhelming. I have good people in my life, but even good people aren’t vaccinated against believing the societal misconceptions of such a complex disorder.

    1. Hi Stephanie,

      “I was terrified of myself for a long time because I was convinced that one of my alters was going to kill me, or destroy all of my relationships.”

      Oh yes, me too. That was (and sometimes still is) a valid concern to an extent. But when my understanding of DID was so heavily influenced by the Sybil Myth, I was incapable of seeing a fuller, more balanced picture of DID. Which, in turn, kept me confused, lonely, afraid, ashamed, and eventually desperate. It’s such a common story. I hope someday people newly diagnosed with DID don’t have to contend so much with the misconceptions and stigma. DID is hard enough to accept without all of that.

  6. My therapist and I have been focusing a lot on my desire to isolate myself. She reminded me that isolation is often the result of shame. The shame she was referring to was the shame from living through a lifetime of abuse.

    It didn’t even occur to me to discuss the shame of the diagnosis of DID itself. This is so accurate, Holly! When I first heard my therapist say the words Dissociative Identity Disorder, I remember thinking …. please no…anything but this! This was predominately due to the stigma attached to this diagnosis, a stigma that I bought into. A stigma that contributed to my own resistance to my diagnosis, which in turn caused me to delay treatment. (I think that my therapist probably tried to explain to me that this is a spectrum disorder, but at the time I didn’t understand what that meant.)
    I hope that one day the media will give a more accurate representation of what it is like for the majority of us with DID. They are doing so many of us a disservice by the way they choose to portray us. As you said, we have already spent our entire lives feeling like freaks.
    Less of this dramatic stigma would equal less shame. Less shame would equal more communication which would equal more external support for us.
    That is why I come here now. I don’t feel shame when I’m here.
    I am very grateful that there are people like you who are trying to set the record straight.
    — Mareeya

    1. Hi Mareeya,

      “When I first heard my therapist say the words Dissociative Identity Disorder, I remember thinking …. please no…anything but this! This was predominately due to the stigma attached to this diagnosis, a stigma that I bought into. A stigma that contributed to my own resistance to my diagnosis, which in turn caused me to delay treatment.”

      That, in a nutshell, is why it is so very important to me to do as much as I can to demystify DID. I think back on my experience and I think, it doesn’t have to be this hard!

      “Less of this dramatic stigma would equal less shame. Less shame would equal more communication which would equal more external support for us.”

      I completely agree. DID will continue to be mythologized and misunderstood in both in the general public and the mental health community if we don’t share the realities of living with it honestly. But shame silences, and if you disclose, you run the risk of being shamed. It’s an ugly cycle that feeds on itself and keeps DID and those with it in the dark. My hope is that discussions like these – here at Dissociative Living, at other blogs, in therapy offices, support groups and among friends – will raise awareness of DID and, in time, people newly diagnosed with it won’t struggle nearly as much.

      Thank you, Mareeya, for contributing your voice. It makes a difference.

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