An Open Letter to Friends, Followers and Colleagues

Dear Friends, Followers, and Colleagues,

I am both excited and terrified to go public about my journey of discovering that I have Dissociative Identity Disorder (DID). I spent over 10 years receiving mental health treatment before I was properly diagnosed with DID two years ago. Since then, I have been able to find an exemplary team of healthcare professionals that have been able to help guide me as I became aware of the 10+ identities that I share a body with. These identities are often referred to as “alters” or “parts” in the DID community. I have learned that my parts have their own unique names, memories and skills. They vary in gender, sexual orientation, worldview and affect. They each have specific jobs or functions they perform to help our system 1 run smoothly. Some of them hold trauma memories that other parts are unaware of. 

Receiving a correct diagnosis has been key in helping me find the right treatment plan. Since learning to work and communicate with my different parts, I have experienced a lot of healing from decades of unresolved trauma, some of which I had been unable to access before. As parts have been acknowledged independently, they have felt safer to express themselves without judgement. Some have even started to share some of their traumatic memories in counseling. I have been able to experience more healing than I ever thought possible by practicing internal communication 2 and allowing each part to have their own voice.

Research on Dissociative Identity Disorder is limited and not easily accessible outside of academic institutions unless you know where to look. Even a quick Google search can turn up a lot of contradictory information from multiple sources that are generally considered reliable in the mental health field. In order for us to better understand DID and its prevalence, we have to understand the causes of the disorder and be able to recognize its signs and symptoms. 

Many clinicians never receive training on dissociation, dissociative disorders and developmental trauma, which can lead to inaccurate diagnoses and the belief that it is rare. However, Dissociative Identity Disorder is not uncommon in survivors of chronic, developmental trauma.

Prevalence rates of psychiatric inpatients, psychiatric outpatients, the  general population, and a specialized inpatient unit for substance dependence suggest that DID is found in approximately 1.1%–1.5% of representative community samples. In a representative sample of 658 individuals from New York State, 1.5% met criteria for DID when assessed with SCID-D questions. Similarly, a large study of community women in Turkey (n = 628) found 1.1% of the women had DID. (Brand, 2016)        

I think it is difficult for people to believe that roughly 1% of the population could meet the criteria for Dissociative Identity Disorder because  we associate it with films and TV shows we have seen that dramatize switches 3 with overt changes in voice, appearance, and behavior. In reality, a switch from one identity to another can be so smooth and subtle that it could easily be missed–even by a trained therapist.

Before I was diagnosed, the only thing I knew about DID was that it used to be called “Multiple Personality Disorder.” The only knowledge I had came from what I saw on TV, which presented characters with DID as either sociopaths or psychopaths. I feared my own diagnosis because I had nothing to associate it with besides horror movies and comedy shows like Sybil, Split, and the United States of Tara. While I have learned a lot about DID since my diagnosis, it is still disconcerting for me to think that anyone might associate me with some of the horrible misrepresentations of DID they have seen in on screen.

In order to change the public’s understanding about DID, we have to start a different dialogue by having intentional conversations with multiples 4 who share their lived experience and the professionals who have treated them successfully.  We hope that by sharing our experiences with the world we can help to break the stigma associated with DID and empower other multiples to embrace their multiplicity. 5 Accepting my diagnosis and giving each of my parts space to voice their concerns and wishes has been one of the most positive life-changing experiences for me, even though it has been very difficult. Learning about my own multiplicity has helped me to understand my inconsistency of preferences, cognitive abilities, skills and memories. Now that I am aware that I share a body, time, and space with other parts, I am finally able to make sense of my life.

Navigating life as a multiple has been stressful, exhausting, and scary. Certain emotions can trigger a switch between one identity to another. It is very disorienting to “come to” after a switch not knowing how much time has passed or what has happened since your last memory. For me, a switch usually lasts anywhere from a few seconds to a few hours, but there have been times that I have lost weeks and even years during times of extreme stress and retraumatization. 

Living with DID in a world that does not understand multiplicity is difficult and no one should have to navigate multiplicity alone, but the reality is that many people with DID must try and figure things out by themselves. Because some professionals still doubt the existence of DID as a disorder caused by trauma, many multiples are afraid to share their experiences with their healthcare providers. In many areas, finding a therapist who specializes in DID is impossible and you are lucky to find someone who even has a basic understanding of the disorder. The DID community desperately needs mental health professionals who are confident and qualified to be able to effectively treat them. By sharing my experiences with the world, I can educate healthcare workers about DID, and build solidarity by creating safe spaces for multiples to find tools and connect with other systems. It is possible to live a good and healthy life as a multiple with the right support.

We hope that you will follow us as we share more of our journey with you. People with DID need advocates and allies to join us in the fight to end stigma and improve services for those who suffer from the debilitating effects caused by the disorder.

Until Next Time,

K.D.+

The Queerly Connected System 6

In our next blog, I will talk about what led up to my diagnosis and and what my experience realizing that I had multiple identities was like.

Facebook: @discoveringdid 

Instagram: @discoveringdid and subscribe to our blog!

Coming Soon:  www.discoveringdid.com 

Notes:

  1. A term used by people with DID to refer to themselves collectively
  2. Communication between multiple identities that is done internally
  3. A switch is a change in which identity is fronting
  4. A multiple is a person with more than one identity
  5. Existing as a multiple.
  6. It is customary in the DID community for multiples to name their system as a collective. It is a fun way to embrace multiplicity and refer to their entire system

8 thoughts on “An Open Letter to Friends, Followers and Colleagues”

  • Thank you for opening up the conversation to help provide understanding for those with DID and also those who want to support loved ones with DID. You show tremendous courage as well as vulnerability! May you be blessed with great insights and many moments of grace on your journey.

  • Thanks, what a great blog post! Finding a good mental health team is key and also so difficult, in my experience. Would love to hear more about how you found yours. I think we are out of luck where we live.

    • We searched specifically for someone who specialized in trauma and dissociative disorders. We probably tried 6 therapists after our diagnosis until we found the right one. We had been seeing a therapist before we were diagnosed who we still see. She has been great but was honestly learning along with us about DID. She’s done an awesome job being open about it and believing us, so we were lucky there, but we also needed someone to help us navigate our system who knew more than we did. We searched on the https://www.isst-d.org/ (International Society for the Study of Trauma and Dissociation)–they have an option to search for a therapist. Most of the therapists on there have received additional training on trauma and dissociation. There were 2 but one wasn’t taking clients and the other was a really bad fit for us. We ended up looking for someone with a doctorate in psychology instead of any therapist and found the therapist we are seeing now. He isn’t a specialist in DID but I signed a release for him to discuss my case with another doc who is a specialist in Chicago. It has been a good experience.

Leave a Reply to K.D. Roche Cancel reply

Your email address will not be published. Required fields are marked *