Friday, January 17, 2020
Fearless Nation PTSD Support Virtual Community
By Bixyl Shuftan
I recently had a talk with Anya Ibor the director of the group, at the main building at the sim. "This is Main Library," she told me, "where there is lots of education/info about PTSD and an art gallery upstairs." After I asked how the group got started, she told me, "We started in 2009, on parcels I pulled together. There are many misconceptions, and lots of stigma about PTSD. We had a Library there, a small house, and meetings. I started to play around with virtual environments for people with PTSD, like a couple of nice meeting places, a Remembrance Place for loss and grieving, companion animals, Yoga Nidra (a mind/sleeping yoga), information on nutrition and bodycare for PTSD, creative arts and art therapy. The idea is: Engage with your avatar, and then take it to RL for PTSD symptoms."
I asked about the misconceptions. Anya answered, "Misconceptions about PTSD include: Thinking that we are 'ticking time bombs,' that we pose a threat to others, that we are weak and unreliable, that we are psychotic. Not true, unless there is a co-morbid psycholigical condition that includes psychosis or voilence. That is rare. Also, veterans and military make up only a minority of PTSD sufferers, most of use are victims of crime, and all abuse (psychological, physical, sexual). Our group includes military in real life, but mostly police personnel, trauma therapists, EMTs, survivors of abuse--and we have people engaged here who are trauma therapists and friends and family who have what is known as 'secondary' or vicarious PTSD."
And when did Anya think the public was starting to take PTSD seriously? "In the late 70s/early 80s," she told me, "through the work of Dr. Bessel van der Kolk and Judith Herman, working with Viet Nam vets and crime victims -- I can send you more detailed information about the pioneers of PTSD. Now it is more widely accepted however, there is still a great deal of misinformation out there. After 9/11 and all the wars of the last 20 years PTSD has gained much more ground in research and simply 'being believed.' The psychiatric/psychological community has made great strides in PTSD understanding. For example, the DSM-5 (2013) separated PTSD from anxiety disorders and put it in its own trauma-centered category. Because there are different types of PTSD, C-PTSD, Combat PTSD, etc. and PTSD is the only condition caused by external forces. For example, some ppl with PTSD have a 'before trauma' and after trauma" view, and some never knew anything but trauma from childhood. But the symptoms remain the same across the spectrum of PTSD.
"So far we have gotten strongly positive feedback. So because I have been getting my Ph.D. in psychology, I focused in doing my Dissertation research on the lived experiences of ppl with PTSD who engae in SL (virtual worlds). The formal name of the study, conducted under Walden University's Institutional Review Board is named: 'The Experiences of PTSD Sufferers Who Participate in Internet-Based Virtual World Activities in Desktop Virtual Reality Environments (DVREs).' ”
I brought up the study, mentioning she was looking for volunteers. Anya answered, "Yes. I need 5 more people with PTSD who are active in SL/virtual worlds to answer a ten item questionnaire about how their lived experiences in SL might affect, or not, ther PTSD. The study is completely confidential and private per APA Ethics Code and Walden University standards. All identifying information will be coded and hidden. So no one has to worry that their real-life identification will be revealed."
And where did the idea for the study come from? The idea came from, well, me," she answered, "I have PTSD and back in 2009 when through work for IEEE Standards Association in RL I was introduced to SL/Virtual Worlds. I started noticing all the potential to work out PTSD issues in-world, and take that knowledge and lived experience into RL. Then I met other residents who were doing the same thing with their trauma, and we just banded together and, well, started growing.
"I have 15 responses now. I need at least 20 participants. Sounds small, but this is Qualitative (QUAL) research project, where the participants provide rich, robust information about their experience inworld in light of their PTSD. I will collect all the Questionnaire answers - which are meant to be easy, engaging, creative, fun - and 'code' the responses to detect patterns of meaning.
"The responses HAVE been rich and robust as well! There have been responses that have surprised me, but they will be included certainly as areas for further future research. For example, sometimes in-world, personal relationships can be as heartbreaking or upsetting as any real-life relationship. That begs a question as to whether SL might be a triggering or exacerbating influence on a person's PTSD."
When I asked how many were in the group, Anya answered, "There are currently about 275 members across two groups (because in the beginning, 2009, I didn't know what I was doing, ha-ha). We have had some terrific events, from 2009-2013 we would have 24-hour events with music (live performers and DJs), lots of art installations, and of course, information. Let me get the YouTube channel link because we had these events filmed in-world. Great videos.
"We've had outstanding support from the music and arts community in SL. Really amazing support. And Linden Labs has been understanding and supportive too, of course. (laughter) Not as financial as I'd like, but understanding and tolerance of us doing something different with the technology in here."
I asked about how much can art heal someone. She answered, "As for the power of art to heal: It can help immensely! Using creativity to express the confusion and anguish of trauma (survivor guilt, anxiety, etc) can sooth the wounded soul. In fact when trauma occurs, memories become divided into verbal and _non-verbal_ memories because the brain hunkers down into 'fight or flight' mode. Using art in-world, such as building, making art, muisc - even how one designs their avatar - are ways to express trauma, verbal and nonverbal. It helps one process the traumatic event, and work on living easy with the trauma memories."
"I am hoping that this research study might show that the engaging and creative activities in-world may prove a legitimate approach to easing PTSD symptoms. But we will wait and see what the data tells us. It is very interesting and exciting to be able to conduct this study. On these sims, I have used research in environmental design, color theory, art to create moods, curiosity,etc. Even the windlight settings are to calm and encourage relaxation and calm. This approach to the sims design has been a work in progress for over 10 years now.
"Unlike other VR sites that use VR for 'exposure therapy' we absolutely do not re-create war zones or trauma events. Exposure therapy was developed for phobias--PTSD is not a phobia. Far from it."
And what were Anya's future plans? "Well, I would love to work for Linden Labs or another VR company," she answered, "and I want to continue to explore the use of VR for trauma reconciliation. I will certainly continue working to help all people with PTSD learn to live in peace with their trauma. ... for anyone who would like to participate, or simply view the questions for the study and think it over, contact me via my Walden University email: email@example.com.
"By the way: Here is quick, simple PTSD education slide show on my website so you have more background on PTSD. http://www.colleencrary.com/ptsd-support/ "
To check out the location, head to