What I Want You to Understand About My Dissociative Identity Disorder

Editor’s Note: If you’ve experienced sexual abuse or assault, the following post could be potentially triggering. You can contact the National Sexual Assault Telephone Hotline at 1-800-656-4673.

I have dissociative identity disorder (DID), which many people don’t seem to understand and seem to be terrified of. I guess I understand the not understanding part, as it is often hard for those of us who have it to understand ourselves.

I want to tell you about my experience, to see if I can help bring any clarity to the understanding and fear of this disorder.

I grew up in an alcoholic and extremely abusive home. Sexual abuse, violence, religious abuse and neglect were part of my everyday childhood. I am not going into detail here about the child abuse I endured, because that is a whole other topic. I just need you to accept I endured a horrific childhood that wouldn’t be imaginable to most people, so I can stay focused on trying to explain the DID.

Growing up, I didn’t have a manual to tell me how to deal with the amount of trauma I experienced, but I was lucky enough to have a resilient brain to help me survive it.

As a child, I was often in overwhelming abusive situations my brain simply couldn’t process at that developmental point in my life. So, my brain ended up splitting off into what I call different “parts” or personalities to handle all the trauma and other things I was expected to handle.

For instance, I had parts who would handle being sexually abused through the night, and other parts whose job it was to go to school the next day and pretend like everything was normal. I have parts who hold specific traumatic memories, and other parts who hold the feelings that go with those memories. I have parts who function just fine in the world but will tell you they can do so because they did not experience the trauma themselves. For them, it is like it did not happen.

I have parts who have their own friends and socialize very differently. The outside world that might notice this chalk it up to mood swings, which I find very funny.

My parts are evolved enough to know they all share the same body, but my parts also each see themselves as a separate person living in this body. Most of them see themselves as much younger than the biological age of the body, which often creates a lot of confusion for all of us as the body is aging.

My parts are very different — some even have different names, ages, genders, sexual orientations, religions, are vegetarians, meat eaters, happy, depressed, cognitively impaired, brilliant, social, agoraphobic, and on and on.

Most people don’t seem to know how to look at me and understand, depending on which part is out, the essence of who I am shifts to that different person. One moment I can be experiencing the world through the lens of a successful and bright 40-year-old woman, and something may trigger me to shift to an 8-year-old boy who is afraid of everything — who has trouble navigating the world and trusting anyone.

My life is challenging on a daily basis. Amnesia and psychiatric symptoms like anxiety, depression, suicidal ideation, self-harm and post-traumatic stress disorder (PTSD) are my biggest struggles. These symptoms are fairly common for those of us navigating DID.

Many people don’t believe it is possible for someone to truly be this way, but the truth is, the brain is an amazing thing; there are thousands and thousands of us on Facebook alone who all seem to have a similar way of living in the world like this as adults, yet we have never met each other in person. We couldn’t have come up with some collaborative scheme to fake this for reasons that would only benefit those accused of child abuse.

I have had this diagnosis for 28 years and it has been confirmed by multiple experts (this fact seems to be important to people, so I put it in). In the 28 years of knowing about this diagnosis of DID, I have worked hard to have some semblance of a life and to get better.

I have given up on getting better at times, and have just tried to learn how to navigate my life without letting others find out I have DID. This is definitely a disorder of secrecy; in my experience, when people find out you have it, they immediately pivot away from you as if you suddenly became dangerous and scary, no matter how long you have known them and in all sorts of capacities.

Hollywood has not helped with people thinking this is a scary, dangerous disorder because it has really only made movies about DID (formerly multiple personality disorder, or MPD) that portray killers and other dramatically scary people.

The truth is:

1. People with DID are typically some of the kindest people you will meet. They are kind because they have been hurt so much that they would never want to hurt anyone. They are often overly sensitive to not wanting to hurt people in any capacity.

2. I realize people do not want to believe DID exists, because then they would have to believe that horrendous abuse is happening to children all over the globe. One of the main causes of DID is experiencing horrendous trauma as a child. The truth is, this is happening way more than anyone wants to fathom.

The biggest truth that people should understand is this: we are already living among you as your neighbors, school teachers, therapists, police officers, friends and so on. You have no idea we are here because our experience says we must keep this particular victim status a secret to protect ourselves from further abuse as adults.

I’ll give you an example of what I mean when I refer to further abuse as an adult. The very system in place to supposedly help those of us struggling with mental illness typically refuses to help those of us with DID, and often doesn’t believe us. The mental health system is sorely lacking in people who are qualified to help someone who has DID, and both therapists and treatment centers typically won’t work with us because of their own lack of education and fear of DID.

Therapists and well-known treatment centers, who specialize in treating “trauma survivors,” won’t treat trauma survivors who have DID — they refused to treat me based on my DID diagnosis.

In my opinion, you have no right to call yourself a trauma specialist if you decide we don’t deserve your treatment because you are afraid of your liability, or some other equally ridiculous fear. We are people who deserve help, and it is the responsibility of the helpers to get the education they need to help all traumatized people, not just the ones who fit neatly on their trauma spectrum.

In my experience, when we feel suicidal or in need of emergency help, we can’t just go to any hospital because many refuse to acknowledge or treat those of us with this disorder. Instead, they stick a variety of other diagnoses on us and medicate us into wellness (there is no medication for DID), so most of us with DID try very hard not to use the mental health system unless it is one of the rare people or places that understands and treats DID.

The most depressing fact is that DID is actually a serious mental health problem that can be “cured” if the person with DID wants that, and has access to appropriate resources, which they almost never do. This makes me sad, and I hope it does you, too. Every day, when I am not focused on my own recovery, I think about how I can change the system to get people who have been so severely abused in this world the help they deserve.

No one deserves the things that happened to them to cause DID. As fellow humans, we should all be trying to figure out ways to help our brothers and sisters who were served these horrific starts to their lives. I hope you agree.

Follow this journey on mistakensurvival.com

If you or a loved one is affected by sexual abuse or assault and need help, call the National Sexual Assault Telephone Hotline at 1-800-656-4673 to be connected with a trained staff member from a sexual assault service provider in your area.

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Thinkstock photo via KatarzynaBialasiewicz