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When You Get Diagnosed With the Condition You Hoped You Didn't Have

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I’ve known for a while now I needed to be real about my dissociative identity disorder (DID) diagnosis. I’ve been avoiding writing about it for months. I keep wishing I could ignore it and make it go away. But it’s time for me to deal with reality, and if I have to do that, I would rather do it here where maybe my reality will help someone else work with their own reality.

Nine years ago, when I was diagnosed with post-traumatic stress disorder (PTSD), I was excited. I finally had a diagnosis to fit my symptoms. It explained why I reacted to things the way I did. There is a certain power and comfort that comes from naming your problem. Naming implies something is real, definable and there is a way forward. I was excited to have a name for what I was dealing with because it meant I had a path forward — albeit a difficult one — and I was no longer alone. Enough other people deal with this that it has a name, I thought. There’s comfort and community in this.

Over the course of this summer, there were different symptoms, different problems, different names. And finally, there was a new diagnosis. This time, there was no rejoicing, no feeling of comfort or power or community in naming the problem. Instead, there was a thought. Anything but this. This new diagnosis is the one thing I’ve pointed to over the last nine years and said, “At least I don’t have that.” But I do. I am I have dissociative identity disorder (DID).

There are many challenging facets to being newly diagnosed with DID. While it is included in the DSM, there are a significant number of healthcare professionals who do not consider DID a valid diagnosis. There is a great deal of specific stigma, courtesy of Hollywood’s portrayal of people with DID. It is difficult to find accessible, reputable information about DID. Personal accounts abound, but very few of them speak to what it’s like to be newly diagnosed. There can be — and is, in my case — the challenge of having a therapist you love and trust who has no real experience working with DID. This is complicated by the fact my alters refuse to speak with my therapist. There is the challenge of trying to explain things you don’t understand to the people who love you, people who say things like, “You need to talk to us. You have the inside information here.” I want to scream, “I don’t! I don’t have any more information than you do! I’m scared and confused too!”

Here’s what makes DID so scary to me. I hear the name of the diagnosis and think, I’m about as introverted as a person can be and I never get to be alone again. I have all these alternate personalities who feel like complete other people living inside my head with me. And I’m supposed to get to know them, be kind to them and even parent the younger ones. I didn’t get to parent my own children because they died, but now I have to parent these children who live in my head? I can’t! I want out! I’m afraid I’ll switch personalities at work, where I’m responsible for the safety, education and general well being of many children. Already, acknowledging alters has led to more flashbacks, body memories, panic attacks and hypervigilance than I’ve had in years. I feel like I’ve lost about four years of progress.

The thing is, though, even as I’m caught up in the pain and grief and increased trauma symptoms that come with the DID diagnosis, even as I yell I want to give up and lay down and die, I keep fighting for healing, too. I’ve known for a long time the way out of this mess is to go through it. There was never going to be an easy fix, a magic pill, a way to get better and be “normal” without remembering the trauma and processing the memories and learning I deserve to be loved and cared for. That hasn’t changed. So I’m further from being well than I thought. So what? It just means I get to keep working. And maybe someday, I’ll meet someone who is newly diagnosed, who has spent years saying, “At least I don’t have that,” and I’ll get to show him or her it is possible to move through the trauma and learn to function in a unified way and lead a (relatively) normal life. And maybe this will be worth all the pain and trouble I’m experiencing now.

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Originally published: January 26, 2017
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