Such a shame
“You’re so bright. It’s such a shame. Why do you think it is that you never got it together?”
It’s easy to presume that anyone who puts thoughts out into the world must themselves be confident. Why scream into the void unless you know the echoes will be heard? Who in their right mind would face the blank page and its blinking cursor without knowing an audience awaits?
All manner of cliches come to mind. Hack phrases and words drained of their very meaning through overuse. Or misuse. Or both. Labels applied without the consent of those upon whom they’re hung are the currency of critics with and without credentials. Offering oneself up to a culture uninterested in context seems like an invitation for feedback that could only do further harm to a psyche without impenetrable stone walls cemented by self-assurance.
Who stumbles forward without answers to offer? After all, aren’t answers what people with questions of their own want from their writers? Why follow a quest for questions?
I could only blink back at the telemed window, shocked momentarily that at 42 I had somehow seemingly retained the ability to be shocked. My neuropsychologist of several years was explicitly declaring me a lost cause, sparking my situational mutism and leaving me unable to utter anything in response.
So she repeated herself:
“You were so accomplished; what a shame…”
She’d cut me off mid sentence as usual as I’d attempted to explain that I suspected my recent Somatic OCD diagnosis might actually be about a sensory processing disorder. Or disorders. A literal lifetime of physicians and ‘caregivers’ assigning incorrect terms and origins to the way I navigated the world had disabled my ability to accurately advocate for myself under the best of circumstances. And midyear 2022 was hardly the best.
I’d learned long ago that physicians only believed other physicians, so I offered up the suggestion my unempathetic OCD counselor had instructed me to take to my prescribing physician: “She thinks my ADHD is getting in the way of my treatment; the exposure-response prevention exercises aren’t working because I’m not focusing.”
My psychiatrist scoffed and offered to further drown me in SNRIs and heavy-duty anxiety meds – the only ‘help’ she dolled out over the previous six and a half years. Tag-teamed medical gaslighting at its best: neither doctor needing to confer with the other about my obstinance.
As she very briefly consulted my file, she tisked and shook her head muttering “such a shame, such a shame” to the tune of “what a world, what a world”.
Yes, I replied; my pharmacy was the one in the file. Yes, I would continue submitting to hours of physical torture through harnessing my visual brain’s ability to incite extreme reactions in my neurological system while denying my body any movement or comfort.
I would need to collapse in rage and confusion several more times before crawling my way to the #ActuallyAutistic community online – specifically the #AuDHD corner populated by women and femmes and others assigned female at birth (AFAB) and therefore socialized as girls. Good girls. The internalized shame was tortured into us as children so young that even in our 20’s, 30’s, 40’s we were unable recognize the racing thoughts of a constant internal monologue as those of abusers and other adults we should have been able to trust. Instructions and punishments delivered to us with impunity under the guise of teaching us to ‘behave properly’.
Every story I’ve heard in support groups, every conversation I’ve had one-on-one, every account I’ve glimpsed in desperate pleas of “Does anyone else know this experience” online has cracked me wide open.
Out through those cracks, my own shame is escaping.
I see now that I was forced to abandon myself over and over and over in a struggle to navigate an impossible world determined to silence me and my very real experiences.
It has only been a week since my first experience with a clinician who listened. Instead of cutting me off for babbling, they scheduled a continuation appointment for the initial consultation on the spot. When I detailed a dozen misdiagnoses culminating in my current psychiatrist’s words, they shook their head and said to take my time – they’d heard my story before.
No, my extensive existing medical records were not going to hinder a trauma-informed, neurodiversity-affirming assessment. I was not going to need to convince my new clinicians that my previous ones had been wrong – an impossible hurdle in any medical discipline, not just for those of us seeking an accurate brain manual and help developing accommodations across the areas of our lives.
This would not be a quick fix, I was told. I said I was aware that we were at the beginning of a challenging and often re-traumatizing experience with no guarantee that answers would offer more than self-knowledge. And probably more questions.
Being disabused of the notion that I am a tarnished trophy at best and a burden at worst is an ongoing process. Accepting my authentic self necessarily means erecting boundaries where I was previously permissive.
Additional abandonments are in my future.
I’m choosing to trust that this is creating space for reciprocity. For those who do not weaponize the concept of love or manipulate to get their own needs met at the expense of others.
Trust is terrifying, an intentional vulnerability. It is looking at life’s little blinking cursor and knowing I’ll make mistakes – new ones and old ones – and choosing to believe I am worthy of the space and grace I have always afforded others.
I am soft launching this space to chronicle my experiences without being able to see the route I’m leading us down for one reason: the voices of others’ who also didn’t wait are how I learned the self-compassion that keeps me alive every day and adding mine to the chorus – even sans confidence – is the only way I know how to give back.
Author’s Note:
In my previous publishing life, I enjoyed the privilege of a behind the scenes backstop of editors and fact checkers. Here, I am again beginning from scratch without a safety net. This is not an excuse for those moments when I will inevitably fail at attempts to be intersectional and inclusive. Instead, this is an invitation for correction – one I’ve always welcomed from others with different marginalizations than those that have informed my perspective.