Learning to Listen

I started attending a group for people with dissociative identity disorder back in June of this year. It was quite a process just to get into it. There was an intake, an extensive intake, of which I was quite resistant with many of the questions. I was asked the ages of my parents and whether they were deceased, to which I answered, “No idea.” When asked to describe my relationship with each parent I said, “Terrible, and don’t care to elaborate today.” There were 16 possible boxes to check under the Family Psychiatric History section. I checked 12 out of the 16 boxes. I was asked to elaborate on all the boxes I checked, and I replied, “Don’t care to do so today.”

The intake form, 3/4 of the way through asked me to talk about my strengths, and I answered by stating, “Not robotically answering questions on an intake form.”

It’s a small wonder I was allowed into this group. I think it may have helped that one of the facilitators was not meeting me for the first time.

We will meet for something like 36 weeks, and we are 8-10 sessions in (I’ve not kept track of the exact number). It’s become one of those things that I look forward to every week, and, at the same time, I don’t want to turn my check in because it’s a lot of money that is not covered by insurance. I know it’s rare to have such a group for DID folks, and I am grateful and always do math in my head each week when I turn in my payment.

It’s hard to run away from this condition when you’re talking about the challenges with having parts every week. Sometimes I feel myself start to slip away during the group, but I can see I’m not alone with the struggle. I’ve known before I started the group that it’s important to listen to my parts, and have consistent communication and collaboration. I’ve learned that one can know that, yet not do it any consistent manner. I’ve found myself in the place where it’s easy to listen to the part or parts that are usually near the front. Those voices at the back get drowned out, and they start to come out sideways because when a part is not heard that is when I start to feel off. But, I don’t usually think to inquire or listen to see if a part needs something when I start to struggle.

I bought a notebook for my homework in the group. I found that parts also liked just writing in the notebook. However, I quickly learned there was conflict among parts as to where each part could write. Now everyone has their own tab and area within the notebook to write. All parts seem to be content with this solution. It surprises me that I still find content I don’t recall writing, but now with the tabs I know who’s writing! I always appreciate clues. Should have implemented this solution years ago.

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To Every Clinician with PTSD and DID Clients

This weekend I finally felt the edge of hope for the first time in a long while. Take note, clinicians: it’s not because of medication, a therapeutic approach, or a hospitalization. It seems that the answer all along was incredibly simple: people. I’ve needed to connect with people, in particular, people that understand dissociative identity disorder. Yesterday I met a handful of women with DID, and I’m buoyed beyond words by the experience.

I mentioned my ever constant and present experience of losing time at home, and spending as little time as possible at home because I lose time. I spoke to a woman with the exact same experience. It’s not lost on me that coming out of the isolation with this meant that another person had to have this same experience. I wanted to throw my arms around her as she conveyed her experience to me.

Here’s a note to clinicians that I wish could be delivered to every single one out there: All the talk therapy, theoretical approaches, medications, hospitalizations and case management will do nothing to alleviate the loneliness of mental illness. Group therapy is a regular part of any hospitalization, but once you’re launched back into the real world, group therapy is surprisingly difficult to locate for non-veterans with PTSD or DID. Beyond group therapy, support groups for non-veterans with PTSD or DID are just as difficult to locate as therapy groups. The result is that such individuals find themselves isolated with no peers to connect with. Even the best therapist is no replacement for peer connections. Please do what you can to create therapy groups and support groups for people with PTSD or DID. Many researchers are spinning out trying to find the PTSD cure. Perhaps the answer is not in the cure, but in the connections. Together we can endure a lot if we feel the balm of support. Can the answer be as simple as connections with others? Maybe. This is where we can learn from Alcoholics Anonymous. We all know I’m ambivalent about AA, but they certainly get the people part of contributing to success with continued sobriety. We can’t cure each other of our PTSD or DID, but we can feel less alone in this fight. And some days, that connection may be the very thing we need to get the next day.

The most important thing a clinician can do is seek to create opportunities for peers to connect with each other. Ask your clients if they know anyone else with their mental illness. If you start noticing a trend in that few, if any, of your clients have peer connections start talking with your colleagues. Look for groups. If you come up empty, your clients have likely come up empty as well. Did you know that aftercare from inpatient hospitalization or intensive outpatient treatment always includes a recommendation for group therapy? Most of the time that recommendation is for a Dialectical Behavioral Therapy (DBT) group, which is different from what I’m recommending. But here’s the rub: outpatient DBT groups are also few and far between outside of major metropolitan areas such as Boston or Washington D.C. Let’s work to create communities of support so that no one with PTSD or DID is ever without the connection of another peer. With all the intellect, resources and energy out there this should be a mission that we can make a reality. It’s not an expensive venture, far from it. Tomorrow I’m going to start to be a pain in the ass on this, and I’m going to start asking every mental health professional I come into contact with if we have such groups. I don’t think we do because I’ve done my own looking in my community, but I feel compelled to turn over every rock. Someone needs to ask “Do we have groups for people with PTSD or DID?” “Why not?” “Has anyone ever tried to create such groups?” “Who would know anything about this?”

If I can be a pain in the ass in my own job with my knack for asking annoying investigative questions, surely I can put that skill to use here.

I implore that we all ask our therapists or our colleagues if such resources exist in our areas. Then we need to ask why, and look to rectify the gap. Humans were meant to connect with other humans. Everyone should feel the edge of hope from the understanding of another peer.