I have a bad habit when I learn things: I want to learn more.
When I was first diagnosed, my first instinct was to learn more and I went to my usual sources of learning. Scientific studies, film, books, theories, and the internet.
Contrary to popular belief, Reddit can often be a gold mine for a skilled academic who knows how to follow up on leads and research in the comments. I was good at it anyway, but college made me a pro. That didn’t help me here.
Trying to learn about Dissociative Identity Disorder was different. Trying to learn about me was very different.
DID is a relatively fresh diagnosis that has gone by a multitude of different names in different cultures and time periods. You not only have to research the diagnosis itself, but if you stop at the science available you will run into a hard wall, so you have to learn how to recognize it in other times and cultures, as well as learn about the impact of literature on the discussion.
For instance, the bible, when referencing demonic possession, will mention multitudes of spirits existing in one body. Were those cases of dissociative identity disorder? Was “Legion” a very hurt person who desperately needed help, rather than a possessed individual? We will never know. What we do know, for sure, is that throughout scientific and spiritual history this nature of duality or plurality of the self comes up often. Sometimes it’s considered a blessing, other times a curse or an accident as in Jekyll & Hyde.
The waters are muddied even more by a peculiar effect that whenever popular media involves the disorder there is often an uptick of people who suddenly claim to have the disorder. That effect has been so pronounced that it’s caused many in the sciences to doubt the existence of the disorder at all. Making it such that even if you are clearly exhibiting symptoms consistent with the disorder you would not be properly diagnosed.
Sensationalism makes the disorder harder to identify as well, in most cases the disorder is identified because a person has strongly segregated individuals within themselves, but *most* cases of dissociative identity disorder are not so easily identifiable, leading to misdiagnosis yet again.
Pros Get It Wrong. Really, Really Wrong.
I, myself, fell victim to this when I was hospitalized as a teen. For my safety, I won’t give the details of exactly *what* got me hospitalized. I will say that for the week(s) leading up to my diagnosis, I was afraid. I legitimately thought I had been possessed by an angry ghost or poltergeist. I could feel rage, anguish, and misery swirling in the air around me particularly in my makeshift bedroom. I looked up wards, spells, glyphs, and anything that I thought could protect me and put them in my room. I tried to get an exorcism. I tried to do one on myself, even.
In the end, I became suddenly aware that I was on a cold table with a bright light in my face and a couple people in tan scrubs nearby. They accused me of having taken drugs because I was shivering and shaking so badly. I didn’t know why I was there or where I was. It took me a while to learn I was even in the hospital and not abducted.
After a week or so of constant observation and management, I was given a diagnosis of “bipolar disorder, rapid cycling, with schizotypal features.” They prescribed a combination of lithium and risperadone that did nothing to ease my memory problems, but the feeling of rage was gone from around me and I “got better,” for a time.
[Note: I later learned the reason I “got better” was because the others had taken the angry one and sealed her in a box in a cave, but I digress.]
Get Tested
In college, people would approach me and insult me for sleeping with people and then acting like I didn’t know them — often I didn’t. I genuinely believed I was getting black out drunk and sleeping with people. God. The guilt I carried over that. I decided to lean into my “asshole” persona others had given me as a result because I figured they were right. It wasn’t difficult for me to polish off a bottle of Evan Williams by myself while writing papers. That was the most likely culprit. Unbeknownst to most, I started sneaking down biweekly and weekly to the free clinic to have myself tested for STIs.
I mention that because that’s where my research started to fail. When I went to Reddit after my diagnosis, nobody had material concerns like how do I keep myself safe and healthy, well fed, and so forth. Nobody was asking those questions. But damn if there weren’t a lot of truly interesting stories from people writing about arguments in their internal worlds, describing the telenovelas inside themselves in startling detail.
Youtube was full of people who had somehow managed to record themselves switching, on cue, with seemingly no triggers and with no negative effects. No confusion. No headaches. Nothing. Somehow these people had gotten everybody inside themselves on board with being shown to the entire world and had mastered the art of summoning them and communicating with them without a problem. Their experiences weren’t just different than mine, they were so unlike mine as to seem a fairytale — and often, they were.
I wish I could count the amount of times some persona had become big on youtube or elsewhere as an “educator,” only for it to come to light that much of their stories had been fabricated or that their other personas would often tell the stories of traumas that happened to OTHER people as their own.
Who wouldn’t feel betrayed, and enraged, both at hitting this wall in their ability to learn and at the people who were making it so difficult for them to learn? I had just learned my own life was far worse than I’d believed. I needed help and what I got was stories and productions.
It wasn’t just that.
I needed to keep my body healthy, learn internal communication, and live an ethical life that didn’t hurt people like it did before I found out. Every time I saw people, spending their energy negotiating things like flag colors or terms for DID, it seemed so trivial.
You had these things happen to you, and your main concerns are what your flag will look like and who gets to claim to be “plural” or “multiple” or which ones are “valid?” These were the discussions dominating the biggest and “best” available resources for me to learn?
While they fiddled around in those discussions, I struggled in therapy and learning the humanity of myself and the others. I had to come up with coping tools and adaptations, ways to communicate and ways to make sure that my life was not disrupted by debts I didn’t know about or malnourishment.
An Incompletely True Story
It’s not my place to say who does or doesn’t have the disorder. Hell, even the medical professionals screw up figuring that out. They did with me. They sent me back into hell with a couple prescriptions because they didn’t know enough about what they were seeing to correctly identify and help me.
It is my place to say that, if I can’t find anything in this world that is true and useful, then I can make it for others. That’s what I’ve always done. That’s what I did with my transition and every topic I’ve ever cared about.
I decided there would be one bit of knowledge out there that someone could read and trust, because I give the truth as I know it and when I learn more I say so. I don’t parade the others. I don’t dance on camera and show off the switching. I try to respect their privacy while doing what I do best, show and tell.
So everything you read about this from me? That’s my true story, the best I know it, filled with all my flaws, inconsistency, and horrors. My memories are full of gaps, my writing will be too. There will be things I don’t know, and I’ll say so because those gaps in my knowledge frustrate me too.
I know better than to think I can teach about DID entirely. I am, by nature of all this amnesia and the stories my brain tells, an imperfect narrator and teacher.
At least I’ll be honest about it. That’s the best I can do. So let’s turn the ringlight on and learn together, shall we?
Thank You For Hearing Me
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Another great piece of writing. I think offering others the truth of what we know and feel is so valuable and I love learning from you whatever the topic and however flawed and incomplete it may be. It always feels real and that’s priceless.