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Dissociative Identity Disorder - Chat Transcript


The Pandora's Aquarium chat room welcomed Jaime on April 22, 2009.  Jaime is a survivor, activist, and expert on dissociative identity disorders (DID). She created an organization to raise awareness and support those with DID, An Infinite Mind. You can learn more about Jaime and DID on her website: aninfinitemind.org

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Shannon: Hey everyone. Thank you for coming to our DID guest speaker chat! We are excited to have Jaime joining us tonight. Jaime is the founder and director of An Infinite Mind, a 501(c)(3) non-profit dedicated to educating the public and professional community about trauma based dissociation with a primary focus on Dissociative Identity Disorder in an effort to dispel the myths and stigmas attached to it. She started this organization after her own diagnosis with DID. Jaime is also an accomplished speaker and strong survivor. I do want to remind everyone that Jaime is not a therapist - however, she is an educated activist in this field. She really knows her stuff!

AnInfiniteMind: Hello everyone and thanks Shannon. I am excited to be here.

Shannon:
With that, we'll get started with some of the questions you asked previously. Once we are through those, we will open the floor for additional questions you might have. Feel free to begin submitting them throughout the chat! We will try to get through as many as possible. Jaime, thank you for being here! Let's go ahead and get started.

Member question: Can you begin by answering "What is DID?"

AnInfiniteMind: Sure thing. DID by the technical term is-The presence of two or more distinct
identities or personality states (each with its own relatively enduring pattern of perceiving, relating to, and thinking about the environment and self). At least two of these identities or personality states recurrently take control of the person's behavior. There is an inability to recall important personal information that is too extensive to be explained by ordinary forgetfulness. The disturbance is not due to the direct physiological effects of a substance or medical condition.

AnInfiniteMind:
In simpler terms; each person is born with ego states. Everyone has a social self, a quiet self, an angry self. People act one way with friends then they do at work, then they do at home. The difference between a multiple and non-multiple is a non-multiple is aware of all these parts of self. They are connected to all the memories and feelings associated with each of those different experiences. A multiple has separation between these parts. They are “dissociated” from those personality states so there is no connection with the different experiences. That is where you start to see all the common symptoms that leads to a DID diagnosis.

Member question: What symptoms should someone look for if they suspect they may have a dissociative identity disorder?

AnInfiniteMind: First it is important to understand DID is a spectrum disorder so the severity of the symptoms will vary from mild to more severe. The general symptoms for DID are:

  • loss of time- which could be a few minutes to a few hours to a few days.
  • amnesia to major life events; for example; not remembering high school, college, your wedding or graduation, etc
  • general life confusion: friends saying you said or did something you don’t remember.
  • Ending up places and not knowing how you got there.
  • Finding things in your bag, closet, kitchen, car…. And not knowing how they got there.
  • Food you didn’t order coming to your table ending with a dispute with the server for being “incompetent.” Not that I ever did that. =0)


AnInfiniteMind: Depending on your severity; you may hear the voices of your parts. Sometimes they are clear, sometimes they are noise but your head is rarely quiet. Overall disconnect and numbness to life.

Member question: You sort of touched on this, but is there a place between being DID with full alters and being fragmented or seeing pieces that aren't distinct personalities?

AnInfiniteMind: Yes! You can have fragmentation and not be DID. This is what I mean by a spectrum disorder. To be considered true DID, your parts must have their own sense of identity, take control over the body, and view the world different from you. It is possible the process of separation was started during the trauma but the situation didn’t allow for total personality development. For people who have fragmentation, they typically fall under the DDNOS label.

Member question: Now that you've explained what DID is, can you tell us what causes DID? Has everyone with DID been abused?

AnInfiniteMind: DID is almost always caused by childhood abuse. The abuse typically starts before the age of 8 but usually before 5. This is the time when the brain is forming identity naturally. After 8-10 years old, this process stops and alternate personality development. Not everyone who has DID was abused but DID is always an escape when there is no escape. DID can result if someone was raised in an unsafe home where there was domestic violence, drug or alcohol addictions, absent parents, etc. It is also important to understand that many people with DID don’t remember their abuse so one may think they have little or no abuse history at
all until they start treatment.

Member question: What treatments are recommended for DID?

AnInfiniteMind: There are many different treatments available for people with DID. They range from traditional talk therapy, hypno-therapy, breath work, EMDR, and neuro-feedback. I strongly recommend you find a therapist who is highly trained in working with DID. Not every treatment will work with every person and it is important to have someone who will know which treatments will work and which ones won’t for you. You can find a therapist at www.isst-d.org. They have connections with highly trained specialist in your area.

Member question: What is the goal of DID treatment?

AnInfiniteMind:
This is one of the more debated areas in DID. Some experts say integration is the only way to true healing. I personally feel wholeness is the goal of treatment. For some, that may be integration while for others, it may be co-existence. It is a very personal decision. “We” chose a combination of both for my healing. I have found wholeness while still being separate and that for me is what I wanted. I now have access to every part of me and it feels wonderful.

Member question: Most people are only familiar with DID symptoms as portrayed in movies like Sybil. Is all DID like that?

AnInfiniteMind: Not at all! While some of the more extreme cases of DID are similar to Sybil, even those are not as severe as the movie makes it out to be. Very, very rarely will someone have a personality change where it is so drastic and noticeable. For most people with DID, the personality change is subtle and only those closest to the person will notice, if they do at all. Before I came out with my DID, some of my friends thought I was moody but they never thought anything was out of the ordinary.

Member question: How is the show "United States of Tara" viewed by the DID community?

AnInfiniteMind: Depends on who you ask. Some people and professionals think the show is at least bringing awareness to the issue and that as the show progresses, it will hopefully start to resemble more of the true picture of DID. However, most of the people I have heard from dislike the show and find it highly insulting to the DID community. The show is full of misinformation and only further spreads the inaccuracies about the disorder. Sadly, this has created even more stigmatic fear. There is an excellent article about this at http://www.sidran.org/sub.cfm?contentID=157&sectionid=4.

Member question: What are some of the best books about DID?

AnInfiniteMind: There are a lot of books available on DID. Of course, it is all opinion as to what are the best books. My personal favorite resource book is The Dissociative Identity Disorder Sourcebook by Deborah Haddock. I also recommend Getting Through the Day: Strategies for Adults Hurt As Children by Nancy Napier. My favorite biography is A Fractured Mind: My Life with Multiple Personality Disorder by Robert Oxnam. I feel all these books show DID in a very positive and true light. You can find links to these and many other books on my website.

Member question: What advice can you give someone who was recently diagnosed with DID?

AnInfiniteMind: This is a hard question because your life will never be the same. Even if you walk away from the treatment, the process has already been started. The best advice I can give is to stay strong and hopeful. The treatment is very, very intense. There is a lot to accept, and a lot to adjust to. There will be many times, you are going to want to quit, give up, or even die to escape the pain. I made it through with the support of my therapist, and the support of my online network of DID friends who let me know this does pass and that a beautiful life is waiting on the other side. Never did I imagine I would be this happy at the end. I remember asking my therapist if life on the other side of all this work was worth all the pain. She told me yes but I never believed her. I had no idea the happiness, strength, peace, contentment, and joy that was waiting for me. My life went from chaotic to calm. From fragmented to fabulous. My best advice; find a really good trained DID therapist and then just let go and trust the process.

Member question: What online resources would you suggest for someone with DID?

AnInfiniteMind: I would recommend our site as a great place to start. An Infinite Mind. From there, you can find all the links to the resources we felt we the most valuable to the DID community.

Member question: What is your opinion on the stigma a person living with DID faces?

AnInfiniteMind: I feel unfortunately, the stigma is that we are crazy, unstable and possibly a danger to others. People sometimes believe with DID can’t hold down jobs, or be respectable, responsible members of the community. Shows like the United States of Tara only further those ideas.

Member question: What is one major misconception about people with DID that you would like to address?

AnInfiniteMind: I want the general public to realize people with DID are creative, intelligent, everyday people. We hold down high level jobs, take care of our families, contribute to our communities, and most are college educated with advanced degrees. DID needs to be seen as an amazing gift of resiliency and not a sign of craziness.

Member question: How can people get more involved in raising awareness of DID and eroding some of that stigma?

AnInfiniteMind: By supporting organizations such as ours, is one place to start. Simply talking about it helps a lot. Share our website and other positive examples of DID. Herschel Walker, who has DID, is on this season’s Celebrity Apprentice. He was doing a fantastic job (until Sunday) and I would say, the most stable of them all. Point him out to people instead of Tara.

Member question: How can I help my friend who has DID?

AnInfiniteMind: For each person, the type of support they need will be different. I would ask them what they need in a friend and go from there. I most appreciated the acceptance from my friends. When I first started to tell, I was terrified I would lose my friendships. When my friends accepted me and my DID, I accepted it in myself and that is when true healing started for me.

Member question: When newly diagnosed, what do you see as the most important thing the survivor needs to learn, that allows for their own internal stigmatization, to transform into something that is useful for healing/ moving forwards without shame?

AnInfiniteMind: For each person that will be different. It all depends on your belief systems and what it is that causes you to struggle with the diagnosis. For me, I was able to move forward into the healing and away from the embarrassment when I learned the science behind DID. It is too lengthy to go into here but I highly recommend doing some research on it. I learned that all my issues that I felt were because I was damaged or crazy, were really because my brain was changed by my trauma and reacting as such. I understood what a flashback was exactly and what was happening in my brain during one. I understood where and why the memories were being held and the importance of bringing it all together. Seeing it from a scientific perspective changed it from me being crazy to it being my brain’s amazing ability to survive the un-survivable. It was then I accepted the diagnosis, understood the treatment, and embraced and respected my infinite mind even more.

Member question: I am almost integrated and it seems like re-learning how to live in the world once I am integrated is going to be almost as hard as integrating. I would like to know how to re-adjust.

AnInfiniteMind: This is a challenge for all people who are integrating or even co-existing. Living as a whole is a lot different then living as a multiple. There is a lot of adjusting to get used to. It took me a while to learn the new “normal” for me. The quiet was a big adjustment. My therapist had to help me a lot with the transition. It is an important step to the overall healing process. There is a great book called Beyond Integration: One Multiple's Journey which I would highly recommend.

Member question: I was recently told that I can turn having alters into a helpful thing for healing by "learning to comfort one another inside." How would one go about doing that?

AnInfiniteMind: This is very possible and a great therapy tool. It takes a long time in therapy with a trusted therapist before you can get to this level of self care.

Jennifer: Hi, now it is time for the second part of our chat: the questions that have been generated by our members over the course of the first half. As a reminder, everyone can continue to submit their questions, and I will approve as many as I can, but they might not all be asked, as we are limited with time. If you don't see your question, please don't resubmit; but I promise to try to send them all along!

AnInfiniteMind:
Sure, but can I remind everyone one more time I am not a therapist so I may not be answer specific therapy questions. Other than that, send them along.

Member question: Is there a time frame for dealing with DID ?

AnInfiniteMind: It depends greatly on the person. They say the average is 8-10 years. I was in counseling for 5 years and I was in the middle of severity.

Member question: I know you said that many personalities are not extreme, but is it okay if one or two of them are and the others aren't? This variation of fragmentation almost, is that normal?

AnInfiniteMind: Great question. Some personalities can be more developed then others. Some may be more interactive in the world and some stay in the shadows. You can also have fragmented parts as well as fully formed identities.

Member question: How can you explain DID to your adult children or family members? And should you?

AnInfiniteMind:
That is a personal call. How open you want to be and with whom is unique to each person. When i tell people for the first time, I explain it simply and positively. I direct them to resources I trust. I tend to only answer the questions they ask as DID is very complicated and too much detail can be overwhelming. I have also found that not everyone needs to know except for me these days, everyone does know.

Member question: Did you and do you like all of your alters?

AnInfiniteMind: No, I did not. When I first started therapy, there was one I was afraid of and a couple I didn't like. I was not excited to bring them into my awareness and into my life. Through my therapy I learned it was these parts that I NEEDED to connect with the most. It was difficult and I can't say that there still aren't days when we are not best friends but it works.

Member question: How would you work with alters that do not like one another?

AnInfiniteMind: I have this challenge still. There can be some heated debated inside my head at times. The one thing they agree is that they disagree. They each stay very far apart and tend not to interact with each other. We had to learn a lot of problem solving techniques.

Member question: Did you have a hard time accepting your diagnosis? In other words, did you believe it at first?

AnInfiniteMind: Very hard. Like I mentioned earlier, it was learning the science that helped me. Before then, I could not accept this was me. I am a college educated, professional woman. How could I have the "Sybil thing?" Sybil was all I knew of it. I didn't know there could be another way to have it. It still took me many months before I turned myself over to the process fully.

Member question: I have many alters, and it is very overwhelming. What can one do to quiet the voices?

AnInfiniteMind: Therapy. It is very important to have a non-biased person to facilitate communication. Once there is a set way to communicate, it tends to quite the voices. For us, it was journaling.

Member question: what symptoms usually get a person into T in the first place?

AnInfiniteMind: generally speaking, most people first go to therapy because of the numbness and disconnect to one's life. The other issues are usually secondary.

Member question: Did any of your alters show negative or destructive behaviour? If so, how did you deal with it?

AnInfiniteMind: Yes they did and it is sadly, very common. This may seem like a broken record, but therapy. I was very frustrated with the self injury and self destructive behaviors. Through the therapy process, I learned that these behaviors were what they knew to do. This was their perceived role. Once we identified that, we were able to teach them a new role and help them work through the reasons they felt like they needed to cause harm.

Member question: What are your thoughts on changing your legal name after integration?

AnInfiniteMind: I have heard many people do that. I didn't but I do appreciate the symbolism.

Member question: you said "It is possible the process of separation was started during the trauma but the situation didn’t allow for total personality development." what kinds of things "interfere" vs "encourage" full "alter" personality development?

AnInfiniteMind: Factors can range from the age of the child when the abuse was happening. Or if the abuse ended before full separation occured. There are many factors which can affect the level of development.

Member question: If we realize we are speaking to a friend's alter, what is the best way to speak to our friend about it?

AnInfiniteMind: Another excellent question. I would suggest to be direct and honest because they would probably like to know. Depending on how you feel about it, you can then ask your friend to be the only person you communicate with or you can have a friendship with the many parts. It is based on both of your comfort level. Some of my closest friends do speak to some of my parts or interact with them in some way.

Member question: You said that scientific resources helped you accept your diagnosis. Are there any that you can recommend?

AnInfiniteMind: Not off the top of my head but I can easily find out. There are some that can be a hard read. I can give a list to Shannon and she can post it somewhere. right?

Shannon: Yup!

Member question: With stressful periods, can alters become "intensified" or rather surface more that were not noticed before?

AnInfiniteMind: I learned a lot through conferences and my T. Stress can easily bring on alters. There are no medications for DID directly but there are meds. they help with anxiety and stress which will lessen the DID affect.

Member question: what can you do to protect the little ones from the memories and behaviors of the older ones?

AnInfiniteMind: Each system structure will be different. For us, we all live on a platform and we each have a room. When one goes in their room, they can shut their door to keep people out. They can open their blinds to see or they can close them. Once closed, they have no idea what is happening outside their room. This worked well for us and still does when we have a potentially triggering situation, such as a movie or intimate time with the boyfriend.

Member question: is it co-consciousness if the alters just don't lose time because they have good communication?

AnInfiniteMind: If I understand it correctly, if you are not losing time because you are communicating with your alters, then yes, it is co-con. I found one of the books I like: Traumatic Experience and the Brain by Ziegler.

Member question: Do you know what has happened after an alter has taken over?

AnInfiniteMind: You will know what happens when an alter is out if you have good co-con. For me, most of the time, I know what happens when they are out because I am still present but inside. Sometimes, they come out when I am sleeping and then I have no idea.

Member question: Are there any ways you recommend to journal? I have trouble always remembering and I find that I have 6-8 journals and have done 10 or so pages in them and forgotten. Any suggestions to improve that?

AnInfiniteMind: I can relate. I actually journaled to my T so I wouldn't forgot them. I was always surprised when she told me what I had written because I didn't remember. You can make sure the journal is "assigned" to stay in one place. You can also give each part their own journal so you don't have to be responsible for them.

Jennifer: Jaime has time for one more question, and I want to thank everyone for their fabulous questions, and I apologize for the ones that we didn't have time to get to. These were a really great bunch of questions!

Member question: What about friends that didn't accept the DID? I have had friends that left because they thought I was crazy?

AnInfiniteMind: Then they weren't friends. I told my friends that I am exactly the same person I was yesterday. Who I am doesn't change because I added three letters to my name. True friends will see that you are a strong survivor with an amazing brain and not judge based on misconceptions.

Shannon: That is such an amazing answer to end on! Thank you so much Jaime. This was amazing information! Also, thank you for everyone who attended. You asked really insightful questions and we're glad you could make it.

AnInfiniteMind: You are very welcome. I really enjoyed talking to everyone.

Jennifer: Thank you very, very much!

Shannon: Jaime is also happy to be contacted via email through her website, An Infinite Mind, if anyone has follow-up questions or would like to discuss anything we chatted about tonight in more detail. We will share that info in the transcript (which will be posted first in the Announcements forum).

Shannon: Thank you again Jaime!!

AnInfiniteMind: My pleasure!


 

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