Dissociative Amnesia After VCUGs: A Lost Sense of Self

If you don't know much about dissociative disorders, you may be wondering: What exactly is dissociative amnesia? Is it related to VCUGs and if so, how? What may a survivor's experience with dissociative amnesia look like? Well, you're in luck! This blog answers all of that, and more.

What Is Dissociative Amnesia?

Dissociative amnesia is a type of dissociative disorder, which are mental disorders frequently associated with trauma involving issues with memory, identity, emotion, perception, behaviour, or sense of self. Dissociative amnesia is defined as a disorder characterized by retrospectively reported memory gaps. It is triggered by overwhelming and extreme stress such as traumatic experiences. In the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), its key characteristic is an inability to recall autobiographical information that would ordinarily be remembered. It is the most common dissociative disorder and it's more common in individuals with multiple adverse childhood experiences, especially if they include physical or sexual abuse.

An individual with this disorder cannot recall information about themself/other people in their life or an event, especially from a traumatic time. There are several types of dissociative amnesia, including:

• Localized - Unable to remember an event/period of time

• Selective - Unable to remember a specific aspect of an event/some events within a period of time

• Continuous - Forgetting each new event as it occurs

• Systematized - Loss of memories related to a specific category or individual

• Generalized - Complete loss of identity and life history

• Dissociative Fugue - Characterized by sudden unexpected travel from home + inability to recall some or all of one's past

Dissociative Amnesia in Relation to VCUG

There is certainly an important discussion to be had about the dangers of dissociative amnesia, including:

Lack of Knowledge About the Traumatic Event

Although dissociative amnesia occurs as the brain's attempt to protect itself from trauma, the body is not so lucky to be able to do this. Someone with dissociative amnesia may suffer the physical effects of trauma without knowing why, leading to confusion, distress, and depersonalization. The survivor may feel as if they have experienced trauma similar to someone else who has experienced a comparable type of trauma, but will not feel comfortable identifying as a person who has experienced that trauma and therefore will not get to experience perhaps one of the only semi-decent things about being a trauma survivor: having access to a community of individuals similar to you which can encourage healing by contributing to feelings of belonging and being understood, heard, and supported.

Impaired Relationships with Caregivers & Family

Additionally, dissociative amnesia may lead caregivers to believe that their child does not need any support following a traumatic event, especially if the caregiver is not attentive to their child's feelings and behaviour. This is exceedingly detrimental since nurturing support from caregivers has actually been proven to provide a buffer to keep stress within the tolerable range, helping to mitigate the numerous poor physical and mental health outcomes implicated in having adverse childhood experiences (Burke-Harris, 2018). Real conversations with children about their trauma and how it is affecting them and their families has proved to be critical in healing toxic stress resulting from traumatic experiences.

The VCUG undeniably damages survivors' relationship with their parents. Many VCUG survivors' relationships with their caregivers suffer because they remember their parents as the people who took them to have the procedure and let the doctors do it. Caregivers are supposed to keep their children safe, so children may feel betrayed when their very own parents fail to do that by taking them to the place where they are essentially sexually abused–not only letting this sexual abuse happen, but facilitating it. In a 1996 study, Jennifer Freyd stated that betrayal by a trusted caregiver is a key factor in determining if amnesia developed for trauma. Since many VCUG survivors indeed experience this betrayal from their caregivers, it can be understood that they are at an increased risk of developing dissociative amnesia.

Secrecy, Silence, & Avoidance of Familial Discussion After VCUG

To add, as discussed earlier, having conversations about trauma and VCUGs is incredibly crucial. Secrecy and silence is yet another way the VCUG procedure mimics child sexual abuse. Caregivers will often avoid discussing or mentioning the procedure with their child whether that be in ineffectual attempts to minimize the traumatic effects of the procedure or because they wrongly believe the child will simply forget about it–and it's usually the latter since doctors and medical websites actively lie by omission and gaslight parents and the public about the nature of VCUGs. This can lead to an inability of the child to encode the traumatic event and cause them to feel disconnected from themself. Nelson found in a 1993 study that a lack of discussion surrounding trauma may lead to failure to incorporate the information into the individual's autobiographical knowledge of self (sounds familiar, doesn't it?). In this way, secrecy and silence may also contribute to dissociative amnesia.

Impaired Sense of Self in Early Developmental Stages

The VCUG procedure also unquestionably damages a child's sense of self. A quote from a 1997 study by Tamara Alexander on genital procedures and the trauma inflicted by these procedures has particularly stuck with me ever since I first read it months ago:

"The boundary between 'inside me' and 'outside me' is not simply physically crossed against a person's will and best interests but 'disappeared'–not simply ignored but 'made-never-to-have-existed.' To physically challenge or compromise my boundaries threatens me, as a living organism, with annihilation. What is 'outside me' has now seemingly entered me, occupied me, reshaped and redefined me, made me foreign to myself by conflating and confusing inside me with outside me. Of necessity this assault is experienced by me as hateful, malevolent, and entirely personal regardless of the intentions of any human agents involved."

I have no words to describe this passage. Being a VCUG survivor, there are many things that you feel a violent gut-punch while reading: this is one of them. Even if doctors really do mean well–which, let's be honest, seems not to be the majority of them considering that they appear perfectly aware of the severe trauma this procedure causes and are still completely fine carrying out the procedure when it's not absolutely necessary despite that knowledge–the young children experiencing this procedure, not being able to understand any of it, will never perceive it in a well-meaning way. As a survivor, it reminds you of the ever-burning question: where do I stop and the VCUG begins? How and where do I begin separating myself from this? The truth is that I can't.

My Experience With Dissociative Amnesia & Dissociative Disorders

The VCUG procedure took absolutely everything about me and flipped it upside down, tampering with everything I was beginning to know about myself as a young child. I, like many other survivors, felt the aforementioned betrayal from my parents for taking me to have this procedure. No one ever had any discussions with me about this procedure afterwards because they assumed I would forget about it. I genuinely had no memory of my VCUG (or rather, VCUGs, because I recently discovered that the procedure was done on me twice instead just once so it seems I have absolutely no recollection of one of my VCUGs). I now have one super short memory, which is a mere three seconds long. That's it. No other clues to put the pieces of what happened to me together. No memory of the most traumatic and painful experience of my life–which may sound like a blessing, however, as you keep reading you'll see how it's quite the opposite.

While my dissociative amnesia kept my brain protected, as a young child I still reaped all the negative consequences of PTSD in the form of somatic symptoms and frightening visions, both of which I had no idea the cause of.

I felt tense and alert at all times, always on guard as if something bad was about to happen at any moment. I couldn't relax because I didn't even know that I was tense and alert. I didn't know I was tense and alert because I was so separated from my body, myself, and my state of being.

I never slept but I didn't know why. Sometimes when I laid in my bed and closed my eyes it would feel like my bed was made of water all of a sudden, or suddenly it was levitating, or suddenly it was closer to the ground than it really was, or suddenly it was flipped 180 degrees, or suddenly it was in another house completely; I couldn't attempt to fall asleep without having out-of-body experiences or, conversely, terrifying visions relating to the VCUGs.

I exhibited physical reactions and behaviours which stemmed from my PTSD, but my dissociative amnesia would have me not knowing why. Therein lied my disconnection from myself. If someone questioned my reactions or behaviours, I would feel as if I was another person entirely, watching from a third perspective like a fly on the ceiling, just as clueless about these things as the next person.

As a child–and to this day actually–I did not want to go anywhere near a medical setting. I can still feel the intense and nauseating fear that would rush through me every time my parents would say something along the lines of, "Well, maybe we should take you to the doctor." To my unconscious brain and traumatized body, the doctor–regardless of who the actual individual was–was the rapist. I didn't remember the VCUGs, but those parts of me did–and my strong reactions to things like that were mortifying to my conscious self because they seemed to hit me out of nowhere, like a baseball flying at full tilt towards my head which I could never see coming.

Throughout all of these symptoms, life for me overall felt more like a simulation than actual living, almost like I was dreaming it all while awake: a lucid dream I could not control. The idea that nothing was real and everything and everyone I knew was somehow made up by my mind was normalcy and it was the foundation of my reality, and if you've never experienced this yourself then you could never truly know what I mean. Sometimes if I stared at myself for too long, I achieved moments where I could actualize the truth that I inhabited my own body, and in those moments, I briefly would be able to feel that everything was real.

---

Losing your sense of self is so frightening and isolating. You go so long feeling like a stranger to yourself and your own life that you end up having quite a vague sense of identity. I don't really consider the years I spent outside of myself as a young child as being part of my life. Eventually my body adjusted to a constantly activated sympathetic nervous system and although I suffer the consequences of that now in the form of physical and mental ailments, I'm lucky that at a young-enough age I started to become able to figure out what traits defined me (even if some of them were assigned to me by other people) and identify what I was passionate about and what I disliked (even if I mirrored it from other people/TV shows, etc.). Better to have some sort of identity than to not integrate with reality at all I guess...

If you're wondering how to heal from dissociative amnesia...

I don't have all the answers–apart from my single little three-second-long-memory, I still don't remember my VCUGs and I doubt I ever will, but I know how incredibly difficult it is to wrap your head around the idea of something so monumental in your life and central to your being happening to you while you simultaneously have no memory or recollection of it. It makes you think: I know this happened to me, but did it? You'll experience a sort of imposter syndrome where you feel like your trauma is all in your head and you made it all up and there must be a fundamental flaw in your existence, but that could not be further from the truth and it's so ironic because, as they say, the body keeps the score. If it truly was all in my head, then I wouldn't have experienced and displayed all the physical signs of trauma. Once I started to remind myself of this consistently, I felt so much more validated and could begin to reconcile my trauma with my sense of self.