One thing that I find so difficult with having dissociated identity disorder is that there is so much misinformation out there about this disorder. It has only been the last couple of years that I’ve started opening up about what I go through. Partially because I didn’t have a solid diagnosis, that I do now have, and also due to fear. People love to assume the worst of others and that puts people like me in a very vulnerable place. I really hope that sharing my experiences candidly will help more people than it causes stress for myself and my family.
When I tell the non-supportive or un-educated people in my life that I have been diagnosed with this the first thing they often say to me is, “I know you and have never witnessed these ‘others’ you have. So you cannot have this”; “Are you sure it’s not just schizophrenia or something”; or they talk about how they “have parts of themselves” that want different things, invalidating what I’m going through while they try to relate to what I’m telling them; or I get told that it’s “just an overactive imagination because how could you possibly have a non-human part”. Usually, I just let them spout off their rhetoric and then decide if it’s worth explaining more or not. Often it isn’t worth it.
Dissociative Identity Disorder is supposed to be covert. About 3 to 4% of the world’s population has a dissociative disorder; that’s about the same amount of people who have naturally occurring red/orange hair. Many of the people who have these kinds of disorders aren’t even aware that their mind has compartmentalized so drastically and those who do find out, usually find out after they are done puberty. This doesn’t mean that there aren’t people who know earlier than that, nor does it mean that if they suspect others reside within them that they’re faking it. It purely means that the brain is trying to protect.
To be diagnosed with D.I.D. (not O.S.D.D. etc) a person must have two or more distinct personality states (a.k.a. alters); have gone through repeated childhood trauma before the age of roughly 8; have experienced dissociative amnesia; have a disruption in autobiographical memory – which would include difficulties remembering everyday events, important personal information, and/or traumatic events.
My personal journey of finding out I have D.I.D. started when I was a young child. Like many children who were abused, I had imaginary friends. The difference was that mine were never a figure outside of myself. They never took up an extra seat at the table, but they would talk to me inside my head, like thoughts that had different voices and opinions. They never made me ignore the people around me who wanted to hang out but they could convince my body to do things that I didn’t want to do.
I’m not sure when I stopped paying attention to these imaginary friends, but up until that time I would talk to them regularly, both as thoughts in my head and aloud. When I told my adoptive parents, as an adult, that it was possible that I could have a dissociative disorder, stories began to come up that made my suspicions seem a bit more real.
One time while at the family cottage I was playing alone in the small bedroom behind the kitchen. My adoption father overheard what sounded like three or four different people in the room with me. It did not sound like one little girl playing alone. So he opened the door to investigate, thinking I had found some friends and invited them over, what he found was me, alone, talking to myself in full conversation.
I got in trouble a lot as a child for lying. All I ever wanted was to be believed, lying wasn’t something that I purposely did until I found that no one believed a thing I was saying anyway. If telling a fib would get me out of more trouble, then okay, I’ll take the blame for my friend’s parents claiming I said I was allergic to cats. I’ve never been allergic to cats, I have no recollection of ever telling someone that I was allergic to them and am not sure why I ever would as I love the animal but this is something that happened to me.
These kinds of incidents happened all the time to me growing up. I thought it was just normal to have a crappy memory and to hold conversations with one’s own thoughts. I continually thought I must be stupid, but my grades showed otherwise.
As a teenager, my family moved across the country and it was really challenging for me. I would ‘wake-up’ on the drive to a friend’s house, or sitting in a pew at church, or inside a grocery store and have no clue where I was or who the people around me were. I learned quickly to pretend I knew what was going on, and I would figure things out as I went. I journaled religiously while this was happening. I would write down descriptions of people, and actions that were taken by others and myself, and the places I found myself. I would leave myself notes and became obsessed with writing lists to ensure that I would stop forgetting to do the things I needed to do. I felt like I had no control over what was happening to me. I broke down multiple times stating that something was wrong with me and that I needed help. My family doctor told my parents and I that I was just depressed, and I was, but it was more than that.
It took a couple more years before I decided to get back into therapy, but by that time I was certain I had alters but I didn’t know that is what they were. I was communicating in my head, in journals, and through my family. That therapist kept trying to tell me I was a chronic liar, depressed and anxious. They wanted me to see a psychiatrist and I did. He told me I had Borderline Personality Disorder (B.P.D.) and this diagnosis explained a number of things but not everything. I still felt like something more was wrong with me. I left my therapist because he was also calling me a drug addict because I was dealing with my physical pain during our sessions in a way that he disagreed with,
I kept most of my journals over the years. And when as an adult one of my best friends at the time was given the diagnosis of D.I.D. by multiple professionals, I figured it was something I should learn more about as the things that she told me were because of D.I.D. were things that we related to each other on, that no one else had in common with me. While I looked into the diagnosis, I also took the time to read some of my old journals. I found that my writing was drastically different styles at times and that I would write about “HER” fairly often. I have no idea who she is/was, all I know about her is from teenage writings of angst and anger. I read about encounters with people that I couldn’t place and I realized that I had a lot of nick-name and online accounts that I had no recollection of ever having. I felt like I had to be faking this. There was no way that this was possible. It freaked me out and I burned a lot of my old journals because of this.
But then my oldest daughter and husband began calling me by different names, the same names that random strangers sometimes called me. When strangers called me by these other names I was able to brush it off a lot of the time, as people often assume that Kay is short for something else. At other times I would think I must look like someone they knew but these people always seemed so sure that I was who they thought I was. But for my family to do the same thing was off-putting.
In 2020 I started seeing a psychologist who specializes in dissociative patients and I reached out to my family doctor for a referral to my (retired) psychiatrist. I got an appointment with a new psychiatrist who then diagnosed me officially with D.I.D. When that happened it was like flood gates opened and all these alters I didn’t know about and didn’t have communication with came forward. It was overwhelming, but I dealt with it as best as I could. In fact, I still am dealing with it.
I was thirty-one when I was officially diagnosed. I still sometimes feel like I’m faking it, or that this cannot be real. I’m told that the goal for most people with alters is to have them all join together, becoming one solid identity instead of pieces of the whole. This is called integration. I experienced this happening once when a “little” and a “co-host” joined together. Their memories merged and they decided to keep the body’s legal name as their own. The idea of this happening to all of the alters in the body and me losing my headmates scares me, a lot. I have always had someone inside my head to bounce ideas off of and I would lose that. I don’t want to be “fixed” necessarily but I do want to be able to live a full, adjusted life.