Diagnosis Complexity

For people suffering from a dissociative disorder, finding professional help is essential, but it can also feel impossible. There are so many hurdles to jump. 

The first problem involves finding a professional trained to recognize and support dissociative clients. The teaching of dissociative disorders within professional establishments is severely lacking. I’ve read countless reports of mental health providers-in-training receiving little more than an hour-or-so of discussion about these disorders, often delivered with an offhand disclaimer that dissociation is so rare they’re unlikely to see it in their office. As a teacher of students with learning differences, many of whom have experienced adoption and attachment trauma, I see it every week. It’s also worth noting that I’m a fun-day music teacher – not a demanding academic teacher or a counselor – so how these students cope with their academic challenges bemuses me.

The second problem involves a lack of respect for the disorder. Yes, we can complain about Hollywood’s depiction of dissociative identity disorder all day long, but I’m not talking about the media here. I’m talking about a lack of respect for dissociative disorders from professionals – people we need to trust. People who house the DSM5 in their offices but are quick to claim that dissociative identity disorder is a feigned behavior encouraged by tree-hugging therapists. 

Honestly, knowing that experiencing dissociative symptoms could put me in the malingerer/hypochondriac category is sickening. Each medical visit is a struggle to appear normal, and talk only about depression and anxiety, and maybe a little about not sleeping – providing I don’t go into much detail. Heaven forbid the topic might reach into the painful depths of my soul and cause me to dissociate away from the anguish, or cause another (hopefully braver) part of myself to take over, or result in me remembering not a single thing that was discussed. 

I was fifty-years-old by the time I found a trauma therapist with experience of spotting and supporting dissociative disorders. She knew what was going on almost immediately, though she gave me time and supported me until I was able to figure it out for myself. My previous therapist had mentioned my zoning out, but in such a way that made me feel worse. “You’ve been out of it for forty-five seconds this time,” he’d say while tapping his watch or gesturing toward the clock. “So, how do you cope with your children at home? Do you just zone out there too?”

My answer had been yes, though I didn’t speak the words. Instead, I dropped my head and felt like a terrible person, vowing never to zone out in his office again. It didn’t work, of course. Zoning out has become a long-term problem that started in my early childhood. I did it in school, often missing large chunks of lessons and finding myself clueless as to what I was meant to accomplish. I didn’t tell my therapist any of this – even though he was the one person who should have supported me; it didn’t feel safe. I was ashamed of myself and ashamed of not being a present parent for my sons. Fortunately, the man said other things that raised red flags and I chose to move on. 

The time it took from visiting my first doctor about the strange symptoms I was experiencing and finally learning I had dissociative identity disorder was over seven years. Unfortunately, that’s about the average. Fortunately, I got there and though I’d love to say that getting a diagnosis was a relief; it wasn’t. The disorder is complex, time-consuming and I’m angry. I’m angry because I’ve taken meds for histoplasmosis – which I didn’t have, and Lyme Disease – which I didn’t have either. I’ve puffed on inhalers for asthma – which I don’t have and taken anti-seizure meds for partial seizures – which I don’t have. For two separate weeks, I’ve lain in a hospital bed with sensors glued to my scalp. I’ve called EEG techs, nurses and doctors to my hospital bed, telling them I’m experiencing dizziness and strange bodily sensations, and that I can smell smoke, and that my nose feels like it’s being pushed into my head, and that my scalp is on fire, and I can’t breathe, and their voices sound like they’re coming out of a television. I’ve desperately wanted it to stop, but each time, they’ve looked at me with blank expressions. “Nothing wrong with your EEG,” I’ve heard repeatedly. “But maybe the activity is too deep.” They’d shrug, push a few buttons, and then leave my room.

It wasn’t too deep. These professionals just didn’t know how to spot dissociative disorders. Laughably, the odds are that they didn’t know such a thing exists. I don’t blame them – it’s not possible to know or understand something that wasn’t addressed during training. Even so, I confess: I’m angry. Seven-plus years of being incorrectly diagnosed and improperly medicated, and made to feel bad for zoning out, is not acceptable. 

Something has got to change.