Complex dissociative disorders are rare, but they’re also being missed. Studies show prevalence to be about 1-3%, in most studies it’s about 1%. This is similar to the prevalence of schizophrenia in the general population. I think that if therapists and other mental health professionals were trained in assessing complex dissociative disorders, the prevalence might be slightly higher than 1%. I also think every therapist should read this book: Treating Trauma-Related Dissociation by Steele, Boon, and Van Der Hart (2017). As my therapist says, it is the ONE book for complex dissociative disorders.
I met an older man named Mike in my NAMI support group who I suspected had a dissociative disorder like me. He suffered from severe depression and intrusive suicidal thoughts. He was an alcoholic, and one day just quit and never drank again. Since he quit drinking, he had nerve pain in his feet that his doctors couldn’t explain. He also couldn’t remember much of his childhood. When his therapist tried to work on trauma memories with him, he destabilized. He attempted suicide and ended up in the hospital. He often couldn’t explain why he felt suicidal, it would just suddenly overwhelm him when he was at work or in the evenings at home. Medications didn’t seem to help his nerve pain or his depression.
I think one of the key features of patients with dissociative disorders is obviously amnesia, they often have large gaps in their memory of the past. If he heard voices, he never told the group. But a lot of people with a complex dissociative disorder are ashamed of hearing voices or don’t notice that their inner world is different from the norm. Often we are used to the incessant chatter or comments on what we are doing. I suspect that Mike had OSDD because he didn’t report time loss in the present. People with DID have more time loss for daily life because parts help them function in activities like work and school.
A huge symptom that a lot of therapists and psychiatrists miss is the physical symptoms we experience. I have psychosomatic nerve pain throughout my back, neck pain, jaw pain, numbness, partial paralysis, and pseudoseizures. It’s important to have any patient check for medical issues that may be causing these symptoms, but if none can be found, doctors are often unable to help these patients. Once I started working with the parts of me who needed help, the pain was more manageable. The seizures and paralysis got better as my parts started to tell their stories to a trusted therapist and began to feel safe.
If dissociation and dissociative parts are not addressed in therapy, the patient will most likely never improve. They will continue to experience severe symptoms like Mike. He was often frustrated and didn’t know why he was so depressed and wanted to die. He was scared of working on trauma because he didn’t want to end up in the hospital again. He told me that he felt that his therapist moved too fast when trying to get him to talk about his childhood. Listen to patients, and go at their pace. Often therapists just want their patients to feel better, and they think that if they’re able to tell their stories, like most trauma survivors, it will help ease their suffering. But patients with dissociative disorders need to be treated in stages. The accepted treatment for complex dissociative disorders is a three stage approach that includes 1) Stabilization and skills building, 2) Working through traumatic memories, and 3) Integration. See the International Society for the Study of Trauma and Dissociation (ISSTD, https://www.isst-d.org/ ) for further guidelines. This three stage approach is also laid out in the treatment book that I recommended.
It is very, very important that a therapist working with someone with a suspected dissociative disorder focus on education and stabilization first. If the patient doesn’t start to understand their dissociative disorder and how their inner world works, they will be unable to integrate memories. They will frequently decompensate when working with memories, and they will likely have suicidal ideation or attempts. Patients need to understand that there are parts of themselves that hold painful memories, emotions, and negative ways of coping. It’s important for them to know that those parts are often in conflict and stuck in trauma time. Some are in conflict over telling the therapist about the trauma. Some parts resist therapy and are afraid of it. DID is caused by developmental trauma, so it also affects attachment. These issues need to be carefully navigated in the therapeutic relationship. A therapist needs to be consistent with clear boundaries for clients to feel safe. If they feel safe in their attachment to the therapist, it’s easier for them to stabilize. Along with building trust and rapport, it’s important to use psychoeducation to inform the patient about their condition. This includes explaining to them that the goal is cooperation and communicate between parts. This can take a long time, and it’s not something that should be rushed. People with DID are often ashamed of their parts and the symptoms they experience. They often try to hide these symptoms. Patients should also learn containment strategies to keep traumatic memories from destabilizing them until they are ready. Grounding techniques are very important, and what’s also important is that the patient learn to teach other parts about these techniques. If the host personality (or personality present in therapy most of the time) learns grounding techniques but other parts didn’t, they are not adequate interventions. This is because parts get activated, but they may not have been present in therapy during skill building sessions, so they do not have the coping skills learned across all parts. That’s why cooperation and communication is necessary for all parts, and this takes time.
It’s also important that therapists understand that treating DID and OSDD is long term treatment that may take many years. It’s imperative that you proceed slowly and not try to rush to the processing of trauma. The client needs to trust you, as well as trusting themselves when it comes to managing painful emotions. I cannot stress enough the importance of cooperation and communication among parts before attempting to realize painful memories. Often a dissociative patient can tell a therapist about a difficult memory and not feel anything. The therapist may think that sharing the memory helped them integrate it, but if the parts that need to be present in the session are not involved, it will not help. It’s imperative that as many parts as possible are included in treatment. Patients with complex dissociative disorders do not respond to typical trauma treatments like trauma focused CBT or desensitization unless all parts are cooperating and part of therapy in some way. In fact, if EMDR or other techniques are used without first modifying them for dissociative patients, it can cause destabilization, as it did for me when I was a teen.
I really believe that any therapist can work with complex dissociative disorders, it just takes a little bit of learning. But therapists are constantly learning anyway. If you suspect you have a patient with a dissociative disorder, please 1) Find consultation or supervision with someone confident in this area and 2) read Treating Trauma-Related Dissociation. Also, share what you have learned with other professionals. It’s important that therapists and doctors help deconstruct the stigmas around these disorders. The more people learn, the better off we’ll be.