Every month I go to a drop-in peer support group for people with Dissociative Identity Disorder (DID). I started going in September, after I was discharged from a hospitalization that was three days of hell. I was desperate to figure out how to work within this system of ours and I thought that talking to other people who were dealing with the same issues might be a good resource. My first meeting was terrifying. I didn’t know what I was going to walk into and I had lots of pretty scary ideas. I wasn’t wrong, but I wasn’t right, either. In the last six months I’ve met many people with DID who are as varied as humanity itself.
This particular group tends to be mostly females, but there are certainly males that attend. I’ve met people that are on full disability, barely able to string sentences together, struggling to survive each day. I’ve also met lawyers, doctors, professors, therapists, artists, students, etc. who have lives that are far more stable than many “singlets” I know. There are Black, White, Latino, Asian, Pacific Islander, and Middle Eastern members. There are people who identify as gay, straight, bisexual, transgender, asexual, and everything in between. Some are teenagers, others are well past retirement age. Some of us are married, others are single. Some have kids, others don’t. There are able-bodied individuals and people that use a variety of different assistive devices.
Among each of us there is also tremendous variability in how our DID presents itself. Some individuals have almost full integration. Others won’t even say the dreaded “i-word”. Some have complete amnesia between the most commonly presenting part (the “host”) and other parts. Some have full co-consciousness and cooperation among parts. Some were diagnosed 20 or 30+ years ago, when it was still called “Multiple Personality Disorder”. Others, like me, are brand new to their diagnosis and trying to navigate all that comes with it. Some are going to therapy three or four times a week, traveling long distances and spending tremendous money to manage their symptoms. Others have run their course in treatment and feel they no longer need therapy. And still others, sadly, don’t have access to the resources to get the help they desperately want and need.
There’s so much we learn from each other. For those two hours I’m like a sponge absorbing up all of these stories, searching desperately for a reflection of my own experience. What’s interesting is that no matter how different the person or the system might be from mine, there is always something that I connect with. Whether it’s the frustration, the loneliness, the fear, the confusion or myriad other emotions and experiences, I find myself nodding along. Sometimes I get very emotional because it’s so powerful and beautiful to be in a room with people that truly know what this is like to go through life in this very unique way.
Today I met someone who is incredibly new to her diagnosis (even newer than I am!). She originally said she believed she only “switched” every year or so. However, as the rest of us started recapping the last month and talked about various topics related to being multiple, she raised her hand again. She said that had no idea that switches could be as subtle and frequent as the way we describe our dissociation. She only had the media to give her context and the media is almost never accurate.
The reality is that the vast majority of us with DID are NOT a “Sybil” or “Tara“. Most of us switch in ways that resemble mood swings or typical behaviors you might see in someone experiencing fatigue, stress, or even hunger (think about how you felt and acted the last time you were really hungry). We generally don’t change our entire wardrobe when switching or maintain completely separate friend groups independent from each other.
We are not separate personalities living in one body – we are one personality made of several separate parts living in one body. And this is an important distinction.
Being part of this support group has really allowed me to see how spectacularly normal people with DID can be (and often are). It has shown me that the way I experience DID is real and valid even though it doesn’t match the dramatized versions I’ve read about and watched on TV.
Most importantly, it has shown me that those of us dealing with this disorder are everywhere. We are your family and friends. We are your doctors, teachers, lawyers, and clergy. We are your students. We are every race, every religion, every color, every sexuality. We are rich and poor. We are old and young.
The only difference between us and you is that our brains did an extraordinary thing to help us survive. And that is a gift.