Meeting The Many Faces of DID

imagesEvery month I go to a drop-in peer support group for people with Dissociative Identity Disorder (DID). I started going in September, after I was discharged from a hospitalization that was three days of hell. I was desperate to figure out how to work within this system of ours and I thought that talking to other people who were dealing with the same issues might be a good resource. My first meeting was terrifying. I didn’t know what I was going to walk into and I had lots of pretty scary ideas. I wasn’t wrong, but I wasn’t right, either. In the last six months I’ve met many people with DID who are as varied as humanity itself.

This particular group tends to be mostly females, but there are certainly males that attend. I’ve met people that are on full disability, barely able to string sentences together, struggling to survive each day. I’ve also met lawyers, doctors, professors, therapists, artists, students, etc. who have lives that are far more stable than many “singlets” I know. There are Black, White, Latino, Asian, Pacific Islander, and Middle Eastern members. There are people who identify as gay, straight, bisexual, transgender, asexual, and everything in between. Some are teenagers, others are well past retirement age. Some of us are married, others are single. Some have kids, others don’t. There are able-bodied individuals and people that use a variety of different assistive devices.

Among each of us there is also tremendous variability in how our DID presents itself. Some individuals have almost full integration. Others won’t even say the dreaded “i-word”. Some have complete amnesia between the most commonly presenting part (the “host”) and other parts. Some have full co-consciousness and cooperation among parts. Some were diagnosed 20 or 30+ years ago, when it was still called “Multiple Personality Disorder”. Others, like me, are brand new to their diagnosis and trying to navigate all that comes with it. Some are going to therapy three or four times a week, traveling long distances and spending tremendous money to manage their symptoms. Others have run their course in treatment and feel they no longer need therapy. And still others, sadly, don’t have access to the resources to get the help they desperately want and need.

There’s so much we learn from each other. For those two hours I’m like a sponge absorbing up all of these stories, searching desperately for a reflection of my own experience. What’s interesting is that no matter how different the person or the system might be from mine, there is always something that I connect with. Whether it’s the frustration, the loneliness, the fear, the confusion or myriad other emotions and experiences, I find myself nodding along. Sometimes I get very emotional because it’s so powerful and beautiful to be in a room with people that truly know what this is like to go through life in this very unique way.

images-2

Today I met someone who is incredibly new to her diagnosis (even newer than I am!). She originally said she believed she only “switched” every year or so. However, as the rest of us started recapping the last month and talked about various topics related to being multiple, she raised her hand again. She said that had no idea that switches could be as subtle and frequent as the way we describe our dissociation. She only had the media to give her context and the media is almost never accurate.

The reality is that the vast majority of us with DID are NOT a “Sybil” or “Tara“. Most of us switch in ways that resemble mood swings or typical behaviors you might see in someone experiencing fatigue, stress, or even hunger (think about how you felt and acted the last time you were really hungry). We generally don’t change our entire wardrobe when switching or maintain completely separate friend groups independent from each other.

We are not separate personalities living in one body – we are one personality made of several separate parts living in one body. And this is an important distinction.

Being part of this support group has really allowed me to see how spectacularly normal people with DID can be (and often are). It has shown me that the way I experience DID is real and valid even though it doesn’t match the dramatized versions I’ve read about and watched on TV.

Most importantly, it has shown me that those of us dealing with this disorder are everywhere. We are your family and friends. We are your doctors, teachers, lawyers, and clergy. We are your students. We are every race, every religion, every color, every sexuality. We are rich and poor. We are old and young.

The only difference between us and you is that our brains did an extraordinary thing to help us survive. And that is a gift. 

Advertisements

30 thoughts on “Meeting The Many Faces of DID

  1. Zoe says:

    I literally have tears in my eyes. I’m so happy meeting a group of people with the same diagnosis has helped show you how unique everyone is and how you’re not alone — this IS a valid diagnosis and condition that many people are dealing with, regardless of their background. It’s so validating in a world that insists on invalidating the DID diagnosis. I want to ask around locally if there are groups for friends or family of people with DID, as I want to learn more so I can be a source of help to my friend and just all the wonderful people I’m meeting. You are not alone and hopefully the efforts of awareness we’re all raising will pay off in the years to come!

    Liked by 1 person

    • Andi says:

      I became aware that I may share my head space with others about a year ago. But I had been suspecting that something was “off” for many years, I just wasn’t sure what was going on. I was diagnosed by my former therapist. I began dissociating and “switching” during sessions, which alerted her to a possible dissociative disorder. The more we delved into it, the more we realized DID was the best fit. Thanks for asking!! 🙂

      Liked by 3 people

  2. Anxious Mom says:

    This is a very informative post! I was really clueless about DID outside of what I saw on USofT, so I’m glad you took the time to write this, and more importantly, that you’ve found a great support group.

    Liked by 3 people

  3. CC says:

    Andi,
    I agree that almost, at least no one I know or have ever met with DID, switches a wardrobe every time they switch a “part” or “personality”. My opinion on USoT is that they did that for people unfamiliar with DID to be able to distinguish the personalities of Tara. Others in the DID community, I know felt differently, some agreed.
    I have a few comments here. Do you make clear on your blog that you speak from your own opinion and do not speak for the entire DID community? I think that is always important because everyone uses different language for themselves, as well as sees themselves differently.
    One example is “the dreaded I-word”. Many people with DID are totally against integration and I think that is a personal choice. I am not sure why you called it dreaded.
    Also, when you say in bold..”we are one personality with different parts”…yes, that is definitely one way that people with DID describe themselves. But it is not the only way. Some do say different personalities, some use ego states, and some use other ways to describe.
    You took much care for cultural, social, and sexual descriptors for example…I am just wondering why you did not take care to be sensitive to those who may see themselves differently with DID.
    This is in no way a diss on your post. I just wondered if you have that somewhere on your blog? Or if you had thought about that at all? I know we realized we did not want to be spokepeople for the entire community so we have it in several places, and write just from our perspective.
    Those are my thoughts. As for us, we can’t handle the groups. we feel like it is being taking the people and multiplying it exponentially..lol..but we have empaths…and me, I just don’t deal…
    Interesting post though… I just had those questions and wondered your thoughts..
    thanks -alex

    Liked by 1 person

    • Andi says:

      Hi Alex, thanks for your questions!

      I don’t put a content disclaimer on my blog because it is a personal blog and thus written from personal experience. One can only come to the conclusion that the words written here are my opinions only.

      I said “the dreaded ‘i-word'” in context to juxtapose individuals who want and work towards integration with those who think it is a dirty word that offends them/their system. My goal was to identify the spectrum of opinions on this matter, without even alluding to my own belief on integration.

      I understand that people have many MANY different ways of using language to describe their experiences. That is true for any and all situations. However, my statement in bold is a reflection of current professional literature on DID. Clinically, DID is described as one personality split into at least two separate, amnesic parts. I appreciate the variations we all have, but I do not believe my blog is a space where I need to indulge every single person’s special way of identifying.

      I do not consider myself a spokesperson for anyone except myself. That’s why this is a personal blog, rather than a community or educational website. And I believe that by writing about my authentic personal experience, I am providing my readers with a compelling (albeit highly individualized) narrative.

      I hope that clarifies some things for you!

      Liked by 3 people

      • CC says:

        Yes, it does for me. it may not totally clarify for people making comments who are saying they do not know anything about DID.
        Of course, it is your blog. I understand that, however readers may not. But I totally respect what you just wrote. Thanks.
        I totally disagree with everything DSM..especially the new version. But I love healthy discussions.
        it would be impossible to indulge everyone..that is the ultimate clusterfuck if you try..haha…
        Thanks a lot .. -alex

        Liked by 3 people

  4. Jay says:

    It is humbling to read about this group and what it means to you. It is also very insightful for someone who does not have DID or knows someone with it. But from what you are saying, it seems that I may have family or friends with DID and not even be aware of it, because shifts can be subtle. Much to think about. Thank you x

    Liked by 1 person

    • Andi says:

      Thanks, Jay. Some people with subtle shifts may just be moody or tired or any variety of other things. But I think so much of why DID goes undiagnosed for many years in the majority of patients is it’s similarity (in presentation) to other illnesses, such as Bipolar, Borderline, or even Schizophrenia. But yes, you may absolutely already know someone with DID and not even know they have it!

      Like

  5. multiplemindsdid says:

    yes we are each individuals with o
    ur own needs and outlooks and even one of us may be polar opposite to the other. so we can be all of that.

    great topic. 🙂 it sound like a nice experience and our switching can be subtle aswell.

    Liked by 1 person

  6. Cat says:

    I think this is an excellent post, I could’ve read much more. The very first blogs I ever came across were by people living with a DID. I must confess, I had absolutely no understanding, but there was an immediate recognition of so many similarities. Nevertheless, some of it did confuse me a little, but your post helps me understand so much more, especially, “One personality made of several separate parts” That may not be everyone’s view, but it seems to sum it up pretty well….for me 😀

    Liked by 2 people

    • Andi says:

      It would be impossible for me to capture everyone’s views about their unique experience of dissociation, but I’m so glad my post helped you understand at least my understanding of DID. Some people may feel they are not one personality made of several parts, but that’s what the clinical research shows. I think it’s important to talk about because this is why they changed the name from “Multiple Personality Disorder” – it was a misnomer, and one we’re still trying to make up for in the community. Thanks for your great comments!! 🙂

      Like

  7. Bourbon says:

    I also see DID the way you do. I dont know if I wish there was a DID group around here or not…. It would have to be remarkably different from the DID groups online to be something I’d want to envelope myself in!!

    Liked by 1 person

  8. LilOlMe says:

    Andi,
    First and foremost….bravo to a wonderful blog. I love it. I can’t even remember how I stumbled upon it this evening. I think I was reading another blog and saw a comment you made and followed it to your profile. Blessing in disguise for sure.

    I have read several posts and keep thinking…YES. OMG YES….what she is saying. Couple posts I kept thinking “I am fairly certain I have a blog post that says nearly same thing in my drafts…” Over and over.

    I have only recently met a few others with DID in person. My therapist coordinated an outing with 3-4 other patients last fall to go see “Inside Out”. There has been talk about starting a group for her patients with DID and I believe maybe another therapist from her office.

    I am going to be attending the Infinite Mind – Healing Together Conference in Orlando 2 weeks from now. It will be the first time I have “knowingly” met others. It is scary as hell and exciting all in one. Scary in that I have not shared my dx with many others. My husband and best friend. I recently just blogged about it and Heaven only knows who ‘knows’ me from there

    Anyway, I am rambling..

    I look forward to reading more of your blog!!

    Liked by 1 person

    • Andi says:

      Hello there! Thanks so much for reading and for this lovely comment! I also want to go to that conference, but it’s hard to get time away while in school so I might try for next year. I hope they do start a group because I attend a peer-support group once per month and it is so helpful to be with others struggling with similar issues. xo

      Like

Leave a comment!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s