Back in 2014 I stumbled across a documentary by National Geographic called Stress - Portrait of A Killer, all about the effects of stress on physical health. This documentary contained a segment on mothers of children with special needs -- positing that this group was perhaps, the most stressed out segment of the population, and therefore more susceptible to the physical detriments of stress due to their "fraying telomeres." Telomeres are the caps on the end of your chromosomes that hold your genetic material together -- but when bombarded by stress these telomeres wear off faster, making your chromosomes more likely to unravel — which ultimately accelerates the aging process.
A little while after that, I came across another article asserting that special needs parents suffer from PTSD similar to combat soldiers. Reading those words, a felt a strange burst of joy followed by a sense of confirmation and relief — they are talking about me. Validation at last! Suddenly the physical, emotional, and mental toll I was collecting everyday was not a product of my imagination. I had a comforting label to put those tokens in — PTSD! Some years later in my follow-up on this subject, I discovered that a new term has been coined and is currently in play in the professional field: C-PTSD. The C stands for "complex."
Classic PTSD occurs after a single stressful, traumatic event -- like a rape or wartime explosion. C-PTSD is different because the trauma is sustained over an extended period of time. C-PTSD is what people develop after they've been kidnapped, held hostage, imprisoned, raised by an abusive parent… or when they happen to care for a physically or mentally ill family member. The unifying thread in all these circumstances is that you are confined within a relationship and must adapt yourself psychologically as a means to cope.
According to wikipedia: "CPTSD is not a personality disorder – rather it is often a case of survival reactions to trauma becoming a fundamental aspect of the personality, in response to living with a personality disordered individual." In the instance of special needs parenting, that "personality disordered individual" is your child. Remind me to tell you about the time Mylo threw the book at me.
Symptoms of C-PTSD Include all the regular symptoms of PTSD plus a few extras:
Reliving trauma, possibly through nightmares or flashbacks.
Avoiding certain situations or activities, or keeping oneself preoccupied to avoid remembering a traumatic event.
Hyperarousal: constantly being on-alert or jittery. Trouble sleeping or concentrating, or unusually startled by unexpected noises.
Emotional disregulation. Uncontrollable feelings such as explosive anger or persistent sadness. Violence, destruction of property, or theft.
Changes in consciousness, like forgetting a traumatic event or feeling detached or dissociated.
Negative self-perception, depression, self-loathing, guilt or shame to the point that you feel like an outsider.
Difficulty with relationships, mistrust or feeling like you don't know how to relate to others. Or seeking relationships with abusive people because it feels familiar.
Distorted perception of abuser, a preoccupation with their power over you or fantasies of revenge.
Loss of systems of meanings: a crisis of faith with your religion or beliefs about the world. Or about yourself and other people, loosing trust in others, avoiding others, or feeling that the world is dangerous.
Suicidal thoughts and fear of abandonment.
Denial and perfectionism, blaming others instead of taking responsibility.
Victims of C-PTSD may also have physical symptoms, such as:
Somatic illnesses: panic attacks, dizziness, nausea.
Eating disorders, substance abuse, alcoholism, promiscuity
As a mother to a child with a disability, you must continue to provide care for your kiddo while coping with all the associated stresses of motherhood AS WELL AS the ongoing symptoms of C-PTSD, which can be triggered by just about anything, which is part of what makes them complex. While it’s true that motherhood takes a toll on everyone, the difference here is that typical kids are generally expected to grow up and care for themselves eventually — wipe their own butts, learn to drive, get a job and move out. The same is not necessarily true for a child with a cognitive or medical disability, and as a parent to one you learn quickly to live in the present, hope for the best, and strive for as much function as possible. At the same time, in the recesses of your mind you are jumping through all sorts of hoops to make peace with the reality that your child may never undergo these simple rights of passage most take for granted. Your child may be a child forever, forever needing someone to care for them… that someone being you.
Sometimes validation can be such a simple salve. Writing this post is as much validation for me as I hope it is for you. And yet, even within these narrow, circuitous halls of C-PTSD I see possibilities, sliding panels to secret opportunities. The gift of this sort of experience is the pressure it provides, simply because this level of pressure generates mutability within an individual. The trick lies in directing the shape we take in response to such circumstances. This is where narrative can be a powerful tool. What story are you telling yourself about your life? A story is a story is a story, but any student of genre will tell you that different kinds of stories produce different sorts of emotions. What story can you tell yourself about your life that provides you with a positive sense of purpose and meaning?
I tell myself a number of different stories about my relationship with Mylo. Whether or not they are “true” is not the point. I tell myself these stories because they make me feel better. I could easily tell myself depressing stories, but let’s face it — depressing stories are depressing. So I tell myself that Mylo and I had a soul agreement with each other. His disability was always part of the plan, and everything is going how it was supposed to go. I tell myself Mylo and I agreed to our parent-child relationship with each other so that we could learn something new. I tell myself he is a warrior spirit, who came to have an intensely physical experience because he has been far from any sort of body for a long time. I tell myself that Mylo being stuck with needles helps him regain a sense of his own physical boundaries as a being (and I tell Mylo that needles are his friends because they help make his body well). I tell myself that I required the pressure of Mylo in my life in order to expand my perspective. I tell myself I needed his presence to force the growth of my roots and catalyze a shift in my awareness. I wasn’t really paying attention before Mylo arrived. Nowadays I take less for granted; but most importantly, I’ve come to see the circumstances of my life as a sort of foil for my spirit; an opportunity to define my individual response to reality as a form of self expression.
This is inner work my friends. On the surface, I may not appear any different than the next woman. I am not always the cleverest person to have a conversation with, and these days my mental sojourns into the abstract can leave me seeming a bit spacey (especially when I mix up my words). After living my day with Mylo, I no longer have the energy or the aspiration to build empires or solve more problems than I have to, and that’s ok. I’m not interested in “proving” anything anymore, because ultimately my life is about my relationship with myself; specifically, this dance I find myself doing with reality. The dance of walking down the hallway with arms aching and full of groceries, and transforming the discomfort of that banal experience into an exercise in patience, physical awareness, and visceral connection. So when I look at the symptom list for C-PTSD and I see phrases like “"changes in consciousness” and “loss of systems of meanings” and “hyperarousal,” I think “Oh yes, all of that is true,” but I see it as the opening I was always looking for. This is not to say that I do not experience the negative symptoms — I experience them, but I have crafted an alternative interpretation and/or response to them as part of my coping solution.
For example, take “negative self-perception, depression, self-loathing, guilt or shame to the point that you feel like an outsider.” These self-loathing feelings were with me intensely in the early years of Mylo’s life, and they return now and again when my energies get depleted. However, my response to feeling this way is different than it once was, thanks in part to another rather helpful C-PTSD symptom: “changes in consciousness, like forgetting a traumatic event or feeling detached or dissociated.” When I am feeling miserable about myself a) detachment prevents me from connecting all too deeply with it, and I interpret the emotions simply as passing feelings, rather than an accurate assessment of my being. In other words, I am able to look at my feelings more objectively, which leads me to b) utilizing my dissociated objectivity. I make an effort to shift my focus from a negative self-perception to a positive one by c) forgiving myself for whatever I might be upset about — even if it’s the fact that I’m an outsider. Then comes the finishing touch d) a splash of story. I tell myself, “Outsiders are part of the fabric of society as much as anyone else, right? I’ve got a job to do here!”
So in essence, sailing these waves of shame and guilt and depression has functioned like a steady current, leading me to the shores of self-love. Or at least, this is the story I tell myself :)