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Dissociative Identity Disorder Benefits and Pitfalls of Online Support Groups

Felicity Lee
Felicity Lee

Dissociative Identity Disorder Benefits and Pitfalls of Online Support Groups

Post by felicity on 2/8/2015, 1:51 pm

Dissociative Identity Disorder
Benefits and Pitfalls of Online Support Groups

Many things can happen in life that changes a person, but nothing more frightening than the loss of sanity.  I lost mine eleven years ago when a psychiatrist diagnosed me with Dissociative Identity Disorder (DID), better known as Multiple Personality Disorder.  Being diagnosed with DID was the most debilitating of all diagnoses, not because of symptoms, but because of the stigma that washed away all previous semblance of personal creditability, instantly devolving me into a disabled, crazy person, deemed unable to care for myself or anyone else.  

It was situational stresses and overwhelming circumstances happening in my life that created a need to seek out help from a psychiatrist.  Anyone, in my position, would have done the same.  For some thirty years, I had been living with DID, struggling to function normally without anyone, including me, noticing that I was different.  

Following the diagnosis, the loneliness of being suddenly 'multiple' was nearly unbearable.  I couldn't tell anyone. My friends and family would most certainly look at me as the public had defined us - 'insane'.  I was suddenly burdened with not only personal pressures, but also a new diagnosis that I didn't understand.  I was what is often called 'newly diagnosed DID'.  I had no therapist, no information on the disorder, no idea what to do next, and was struggling with many of the symptoms of DID.  I decided to go to the internet for help.

The next day, I joined my first internet DID support group.  Although the diagnosis of DID was my major stress at the time, it was not the cause of my distress.  I had been struggling with the symptoms since I was a young child.  I had always been successful in career, education, and family.  Now, for the first time in my life, I felt isolated, scared, and vulnerable.  The online group was my answer to a new life with friends who were just like me - or so I thought.  I now realize that it was more than just friends that I sought.  I wanted a family, siblings, a mommy figure - people who would care about me, a possibility never before fulfilled.
Like many people who join internet support groups, I knew not to trust anonymous figures with silly names like 'silverypuppy', 'shadow', and 'mysticsorrows', but the kind words and cartoon emoticons being written on the site warmed my heart.  Every morning, I woke early to read answers to my posts.  My biggest fear was that I might write something wrong which meant that the owner or staff would ban me or worse - write me a private message threatening some other punishment.
In time, the group became the family I had been seeking, and the owner, the mommy figure for which I had always yearned.  This was obviously not an environment conducive to anyone who had DID, but the opposite - a space where vulnerable folks were made to feel dependent on a sadistic owner and controlled members.  The drama within that community, encouraged by the owner and staff, was reminiscent of middle school, triangular bullying.  I remember the first time that I was the victim of their control. I was torn apart by grief while unknowingly becoming even more addicted and obsessed to remain a member there.  The environment was identical to the dysfunctional family setting that had caused my trauma in the first place.  

During the four years that I interacted on that forum, I found a good therapist, educated myself, and finally, realized how and why that forum was detrimental to every member's mental health and stability.  Unlike other groups off-line, there is no criteria or credentials needed to start a support forum.  The owner/founder can be anyone who only needs click one button ("start your free forum").  The rules and structure of the forum are set by whoever started the group and enforced however they deem appropriate.

In order to better understand why the structure of support groups is vital to members stability and emotional well-being, it is important to understand the diagnosis, causes, and symptoms of Dissociative Identity Disorder (DID):

Diagnosis Criteria:

"A.     Disruption of identity characterized by two or more distinct personality states, which may be described in some cultures as an experience of possession. The disruption of marked discontinuity in sense of self and sense of agency, accompanied by related alterations in affect, behavior, consciousness, memory, perception, cognition, and/or sensory-motor functioning. These signs and symptoms may be observed by others or reported by the individual.

B.   Recurrent gaps in the recall of everyday events, important personal information, and/or traumatic events that are inconsistent with ordinary forgetting.

C.   The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.

D.     The disturbance is not a normal part of a broadly accepted cultural or religious practice.

E.     The symptoms are not attributable to the physiological effects of a substance
(e.g., blackouts or chaotic behavior during alcohol intoxication) or another medical condition (e.g., complex partial seizures)."  (American Psychiatric Association, 2013. Desk Reference to the Diagnostic Criteria from DSM-5).


"The main cause of DID is believed to be severe and prolonged trauma experienced during childhood, including emotional, physical or sexual abuse. The development of DID is understood to be a result of several factors:

   Recurrent episodes of severe physical, emotional or sexual abuse in childhood.
   Absence of safe and nurturing resources to overwhelming abuse or trauma.
   Ability to dissociate easily.
   Development of a coping style that helped during distress and the use of splitting as a survival skill.
   While abuse is frequently present, it cannot be assumed that family members were involved in the abuse.


"Many symptoms of DID are similar to those of other physical and mental disorders, including substance abuse, seizure disorder and post-traumatic stress disorder.
The common symptoms of DID include:

   Inability to remember large parts of childhood.
   Unexplained events and inability to be aware of them (such as finding yourself somewhere without remembering how you got there or new clothes that you have no recollection of buying).
   Frequent bouts of memory loss or "lost time."
   Sudden return of memories, as in a flashback and/or flashback to traumatic events.
   Episodes of feeling disconnected or detached from one's body and thoughts.
   Hallucinations (sensory experiences that are not real, such as hearing voices talking to you or talking inside your head).
   "Out of body" experiences.
   Suicide attempts or self-injury.
   Differences in handwriting from time to time.    
Changing levels of functioning, from highly effective to nearly disabled.
Depression or mood swings.
   Anxiety, nervousness, panic attacks and phobias (flashbacks, reactions to stimuli or "triggers").
   Eating disorders.
   Unexplained sleep problems (such as insomnia, night terrors, and sleep walking).
   Severe headaches or pain in other parts of the body.
   Sexual dysfunction, including sexual addiction and avoidance." (AAMFT, http://www.aamft.org/iMIS15/AAMFT/Content/consumer_updates/Dissociative_identity_disorder.aspx).

Clearly, folks with DID are dealing with significant issues and symptoms.  Everyday living with DID is an ongoing challenge for most survivors.  Therefore, online support groups are beneficial to survivors of early childhood trauma only when the environment within the group is conducive to accepted therapeutic goals designed to help individuals move forward with healing.  The idea is to further healing rather than exasperate the symptoms rendering survivors lives even more difficult to manage.  

With these thoughts in mind, I began an online support group some eight years ago and named it 'Ivory Garden'.  My experience operating online support groups is vast.  I have found that most newly diagnosed members join groups feeling much as I did so many years ago.  The biggest challenge for any group is encouraging staff and members to support and educate each other - rather than befriending, mother, and gossip - as happened on the forum that I had belonged so many years ago.  Newly diagnosed folks are our most vulnerable members.  They will often leave our group or are recruited by online forums that offer them friendship, teddy bears, card exchanges, hugs, kisses, and 'mommy figures' to take care of or save them.  They may never realize why their symptoms increase, that their dependence on the staff and members of these groups strips away any sense of independence, strength, and healing.  Most commonly, members will find themselves literally unable to tear themselves away from these groups and people.  

Let's take a look at some of the common goals of therapy and view how Ivory Garden is structured to accommodate an environment conducive to healing for folks with DID.  You will realize how and why online support forums operate differently.

According to the 'Phase-Oriented Treatment Approach' - the goals of therapy are:

"1. Establishing safety, stabilization, and symptom reduction;
2. Confronting, working through, and integrating traumatic memories; and
3. Identity integration and rehabilitation"

"The phases of treatment describe the dominant focus of the therapeutic work during each stage; overall, they assist the DID patient in developing safety, stability, and greater adaptation to daily life. Work with traumatic experiences is carefully titrated and paced. For instance, in the stabilization phase, treatment may focus at times on traumatic memories, but from a distanced and cognitive perspective. In the middle phase of treatment, stabilization and symptom management is often still necessary to prevent patients from becoming overwhelmed by the nature of their work on traumatic memories. Attention to rehabilitation and better overall life adaptation is essential throughout any treatment process and should occur in each phase of treatment."(International Society for the Study of Trauma and Dissociation (2011): Guidelines for Treating Dissociative Identity Disorder in Adults, Third Revision, Journal of Trauma & Dissociation,
12:2, 115-187).

It is my belief that regardless of how scared we are, how vulnerable we feel, and how much we yearn for parenting and hand-holding, we are strong adults able to live independently with support within a group of others who are also strong and independent.  Ivory Garden members are amazing.  They support each other with a strength that is undeniable.  Members work in therapy and come to the forum sharing their successes and struggles.  Within the group, they find education, creative activities, open discussion, coping skills, webinars, support, and strength to move forward. Members validate and respect each other in a healing and safe environment where the owner/founder is not a 'mystery person' with a fake name, but the forum is actually part of a legitimate, charitable organization.  

It is understandable and even expected that, in a vulnerable place, we all want a hand to hold and a mommy figure who we can believe truly loves us.  No credible therapist can offer us any such thing.  It is only found on internet support groups who will coddle to people's every need just to gain members.  

I wish I could have read this article twelve years ago.  I know that it would have been so very scary starting with a new group, not knowing anyone, making mistakes, and all.  Knowing what I know now, I would have done it then - I could have done it.

Identifying Pitfalls of Online Support Groups:

The group is NOT part of a legitimate organization.
The owner/founder uses an anonymous name.
You are encouraged to act childish or needy.
Members, and especially staff or owner, write to 'littles' or write in 'littles' language on the forum.
Support is given with loving gestures, hugs, and/or prayers.
Members are encouraged to mail gifts, teddy bears, or cards to other members.
Members are encouraged to share the 'names' of different parts of their system.
Making 'friends' - especially through the phone - is encouraged on the forum.
Therapy is offered in any form - from phone contact to private internet chat.
Writing memories of past abuse is encouraged on the forum (this should be left for therapy).
Members feel guilty leaving or putting up boundaries having to do with that forum, the owner/founder, and/or staff.
Members feel like they can't live without that forum (they are addicted).

None of these pitfalls are conducive to the goals of treatment.  Therefore, the experience of participating on the forum is actually thwarting healing rather than promoting.  

When they are structured correctly, online support groups can be such a benefit to anyone.  Even more beneficial is when you best utilize a forum such as Ivory Garden for your own healing.  Get involved; challenge yourself in the safe environment; educate yourself; share what you know.  And, when they offer a conference, know that you can do it, you are strong and independent, and your community is there to support you every step of the way.

The very best to you all.

Copyright protected: Felicity Lee, 2015

Do not copy without permission from author.

1,000+ Posts
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Re: Dissociative Identity Disorder Benefits and Pitfalls of Online Support Groups

Post by susy16 on 2/14/2015, 8:19 pm

You are amazing and wonderful and a blessing. This entire statement is so true it just blew me away. WOW!!!
Felicity Lee
Felicity Lee

Re: Dissociative Identity Disorder Benefits and Pitfalls of Online Support Groups

Post by felicity on 2/15/2015, 12:48 pm

awww, thanks. I love writing articles, but don't have the time to do too much. Recently, I have taken the time to write a few - this being one that I felt strongly needed to be written. I am glad that you liked it.

5,000+ Posts
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Re: Dissociative Identity Disorder Benefits and Pitfalls of Online Support Groups

Post by anthology on 2/15/2015, 12:59 pm

well written. I'm sorry you went through such an unhealthy experience before, but it's good that you learned how to properly run a support site from it :)

- host
Felicity Lee
Felicity Lee

Re: Dissociative Identity Disorder Benefits and Pitfalls of Online Support Groups

Post by felicity on 2/15/2015, 1:47 pm

Hey - that is true - still learning.

I truly believe that it 'can' be done - for the benefit of everyone - or I would have given up so many times by now. I believe that there 'can be' respect and validation along with freedom of expression - without the gossip, power-trips, and drama - *heavy sigh*. And, without the 'policing' of the board and members.

Remember that I am a special ed teacher - I wanted the same in my classroom - middle school - the kids were amazed that any teacher would 'trust' them to treat each other and me with respect - without the drama, bullying, etc. that happens at that age. So...... well, it didn't always happen - it was always a work in progress. Maybe, the same here - that's why I have been working at this for soooo many years - yeah? Because, we are working with people - variables that can't be 'controlled' by the very definition I have put forth.

For instance, I 'have' to trust the power-hungry admin working to 'take over' - manipulating members secretly, etc. Otherwise, I become the 'controller' - stooping to her level. I have to 'hope' that she comes to see that she is being 'trusted' to be the good person we think she can be. Trust, in relationships, is vital - any relationship. We all know that - but, if we trust the wrong people - who gets hurt? This is what I think that we are all learning - important lessons to take out into the world - and - it is my experience that it is common to EVERYONE - no one is perfect - the human variable.

You can tell that I have been thinking this whole thing through - trying, at least.


Re: Dissociative Identity Disorder Benefits and Pitfalls of Online Support Groups

Post by krathyn on 5/23/2015, 9:32 pm

it's a good article.
i think i recognize some of those "other online forums"
when i first came to IG my T did not think it was a good use of my time.
after a couple years she noticed i had learnt some ways of dealing with people that i did not learn in T, and so agreed it was a good thing for me to do.

wishing you well-
Krathyn, Sebastian, Strawberry, (Kathie 3-9), kathrynmarie
Krathyn of We5:    we accept all intentions of support--


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