Personal Stories

When Did It Start?

[TW: mentions of emotional abuse, suicide mention, possible triggers for dissociation]

By Elle Rose

The woman across from me is looking at me curiously, trying to probe into my strangely absent brain. I think about it carefully, wondering when my brain detached itself from my surroundings and never came back. It had detached many, many times in my life, leaving me wandering through hallways confusedly, or looking at my hands and wondering who they belonged to. I pressed on my thumb, causing it to pop quietly, and consider my response.

How did it start?

Looking back at my life is a strange thing. When you live with depersonalization derealization disorder, you feel perhaps like your head is filled with cotton, or like you’re constantly waking up from small dreams and only just remembering what went on. The memories roll through my head like film on an old projector, dusty, strangely spotted and covered in fuzz. Each time I pull my memories to the surface they feel strange, spotted, covered in grime and crackling apart. I pull one out for her, the memory of my suicide attempt, and talk about how afterwards nothing felt the same, as if I’d died and no one had told me. We talk about it for a long time, about different levels of emotional abuse, about the trauma related to the incident as a whole. I run my fingers over my scars absent mindedly and nod, drifting through the walls of her office and above us, robotically talking as if it really is me there, answering the questions. I can’t really be sure if it is or not.  I also can’t think how to explain it.

How did it start?

We spend time discussing the dissociation, the diagnostic criteria, and my questions about whether or not I’m on the right track with what I’m asking. We review the point on the Cambridge Depersonalization Scale, one of the few tools used specifically for this type of diagnosis. The questions it asks feel strange to me – here, in words, are the things I’ve found myself wondering for years now. When I weep or laugh I do not seem to feel any emotions at all, or, it seems that things I’d done recently had taken place a long time ago are both answered as ‘frequent’, as are many others. When we score it, we end up with over 200 points. A diagnosis of depersonalization disorder requires only 113 points.

I sit back, unsure how to feel that my questions were, in fact, on the right track. My therapist asks me some more questions over the coming weeks and, after I am prescribed Adderall and find it successful in treating my ADHD-PI, she concludes that depersonalization disorder is a correct diagnosis for me.
I get into my car, staring out the window and noticing that the grime keeps it from seeming as if there is nothing between me and the outside world. I reach forward, touching my fingers gently to the glass, considering the question.

When did it start?

There are many possible answers for when it was learned. Perhaps I learned it when my father was in the garage, throwing wood and yelling at himself. I would sit there in the living room, terrified, frozen, my body completely rigid. My mother would shrug and say it was fine as she went about making dinner, ignoring his temper tantrums that scared and confused me. Or perhaps I learned it when I was in the back of a car, biting my cheek so hard that it bled, scared of the older man driving the car and the abusive remarks he was making towards his son. It might have been earlier in life when I walked my fingers gently up my wall at night, trying to stave off nightmares, making pictures out of the blobs in the wallpaper. Or, maybe it was later, when I began to truly believe there was no point in standing up towards certain abuses because that would simply land you with more pain than before.

It’s hard to say. When your brain is fuzzy and your mind both tells you it exists and also does not exist the questions like “when” become rather arbitrary and if thought about too much, very stressful. When takes on a different meaning than it did before because there is no “then”, only “now”, and “now” is fleeting at best. The world slips through my hands like china dust and I try to catch what I can in the wrinkles of my palms. It scratches me up, but it lets me know I still am, that I still exist somewhere next to the world everyone else sees so easily.

The strangest part is that I am still undeniably a person. I still laugh, I still dream, I get angry and I cry easily during sad movies. My emotions, though, do not feel as if they belong to me, but are instead borrowed. My stronger emotional reactions are often quickly swallowed by my dissociation, causing me to sit in silence for hours, unable to think or sort through the fog that I find myself suddenly engulfed in. I do not appear to have depersonalization disorder because one of the characteristics of it is going through life like an automaton as if nothing is wrong. Those of us with the disorder often have to do digging ourselves and try to find a clinician who will listen to our concerns, rather than brushing off our questions before we can even finish them. I have spent years convincing the world that I am not living in madness while in private I have often cursed at myself for thinking irrational and dissociative thoughts. It is a strange disorder to live with because, unlike someone who suffers from psychosis, we know that our dream like feelings are not reality. This causes great distress, confusion, depression, and anxiety, and can be very difficult to reconcile.

When did it start?

I don’t know, exactly. I have a general idea. My life feels like I’m reading old letters stored in a box, looking at fading Polaroid photographs and watching film reels. It is still, bizarrely, mine. I feel like I’ve gone mad, but I know that I haven’t. I am still somehow myself, underneath all of the chaos and trauma.

I am mad, maybe. I don’t actually know – and I don’t know, entirely, that I’m not dreaming, just as you don’t completely know that you’re awake. Consciousness is a very misunderstood, mysterious thing. Deep down I do question these things, even though I know they are irrational. I am not sure how you would be able to put a time stamp on madness of any kind, or if you should even try.

I don’t know that it matters, really, when it started. I do know it’s there, and it has a name. And that is something that, when the world feels entirely out of my control and I fear the disorder, I hold onto. It means I’m not alone in it. And it means that maybe by speaking out about it, more people will realize they aren’t alone either.

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