Speaking Truth to Stigma on Dissociative Identity Disorder

Our lived experience with mental health and trauma matters. However, we all must be mindful of the risks and benefits of disclosing a mental health diagnosis and in sharing our histories of trauma with others. There can be great rewards and an element of risk.

Being open and vulnerable with our experiences can increase empathy and provide others with a sense that they are not alone.

I/we came out with our lived experience of complex post-traumatic stress disorder (CPTSD) and dissociative identity disorder (DID) publicly in 2021, primarily to stand up to stigma as a licensed mental health professional to advocate for others like me, especially for those that are living in fear and silence. I live with one of the most highly stigmatized and misunderstood mental health conditions, and though I was fearful to disclose it, I took the leap of faith that doing so would bring an opportunity to change the narrative around DID.

DID, historically referred to as multiple personality disorder (MPD), has been in the mainstream media since well before I was ever born. The stigma around it is atrocious and completely inaccurate. Many of us living with DID have been harmed by stigma, people’s jokes, and inaccurate education and training within the mental health field. Disclosing a mental health condition will not be the right choice for everyone, but for me it was a critical step for moving into my authentic truth, which is that I live with 22 other alters also known as identities/parts. It took a great deal of personal healing to accept the fact that I have DID and to own the fact that I live life as many alters within one body. If I am honest, it is still hard at times to simply be all of me while those around me are often watching to see if they can “see” DID. Well, let’s just be clear that it is not a condition that you can “see,” much like cancer and diabetes.

Dissociative Identities

Source: Adrian Fletcher

When I/we came out, we very quickly discovered that sharing our story was providing hope to others. We started to receive emails and social media messages from all around the world from those living with DID. Many of them are in hiding, too scared to come forward out of fear that they would lose friends, their loved ones, or their careers. Their fear is valid. Many have lost friends, family, and their jobs because of sharing this truth about themselves, mainly because of the stigma and inaccurate perception around what DID is. I also want to be clear that having DID is not something you identify as. It is a condition. It is not a choice.

What I want people to understand is that DID is a brilliant adaptive coping strategy that developed to help those of us living with it survive abuse that most people cannot stomach hearing about. That brings me to my next points about disclosing traumatic material. It is not necessary for the healing process, and disclosing incidences of abuse as the person who has survived the unthinkable comes with a great deal of pain and anguish. There is often an element of re-experiencing the trauma, such as nightmares, panic attacks, flashbacks, attachment triggers, and fluctuations in mood, from intense grief, to anger, to sadness. These are very “normal” responses to revisiting the trauma, even though our society places this unrealistic expectation upon people to cover up or mask their feelings, or even pathologizes them.

We are all doing people a disservice when we send the message that recovery means no more feelings/symptoms. That’s simply not true. I have been on a healing journey for over 10 plus years and will be healing from being trafficked for the rest of my life. My coming forward process brought me to a whole community of people living with DID who hear me, see me, and honor my DID system of alters/parts far better than any healer I have had on the journey, and it’s because the DID community is loving, accepting, kind, understanding and we all have an unspoken language for our experiences. Isolation kills people, community heals.

When people feel alone and isolated, they often become depressed, anxious, and their thinking can become distorted, which can lead to suicidal thinking and feeling like you don’t belong. I stepped forward to share my story of living with DID to help the mental health field see that we have work to do here. We have an underserved population of extreme trauma survivors that needs compassion, care, concern, access to services, competent professionals, and improved training and education in the treatment for DID.

Katherine Ponte, J.D. MBA, CPRP talks about coming out in her article published by the National Alliance on Mental Illness (NAMI, 2021), which was a huge support to my own journey. Her points regarding the positive and negative aspects of coming out include the following.

Potential Positive Aspects:

1. Personal growth
2. Better care and support
3. Connection and overcoming loneliness
4. It can allow you to be your genuine true self
5. Improvement in self-esteem & reduction of shameful feelings
6. Personal empowerment

Potential Negative Aspects:

1. Stigma
2. Loss of friends & family
3. Insensitive friends who gossip or may exclude you from social gatherings
4. Unhelpful or hurtful advice
5. Workplace discrimination

Ponte emphasizes the importance of being careful about your decision to come out. I agree with her. You never want to feel pressure to disclose, and the decision to come out is irreversible. She suggests thinking through adverse consequences and minimizing risks through preparation. Like Ponte, I was willing to come forward despite the risks. I also spent months consulting and preparing before embarking on my leap of faith. I have also learned to pace the disclosures. Disclosing the fact that I live with DID is one thing; speaking openly about my childhood history of being trafficked is another and not something I want to do much more of. I've learned that I would much rather bring love, hope, and inspiration to the world, instead of reliving my dark and scary childhood.

Dissociation Essential Reads

Grounding Techniques to Interrupt Dissociation

How to Manage Dissociating

Honoring yourself, your boundaries, and especially your alters/parts first if you live with DID is crucial. Be gentle with yourself as you navigate your healing journey. You can read more about Katherine Ponte and her coming forward with bipolar disorder in the reference link below.