I'm usually not shy about anything related to my SPD and intertwined symptoms of anxiety - if you've ever read my blog, you know this about me. If it needs to be said, I will work through my own insecurities to tell you the real story - especially if I think it'll help even just one person live a happier life with sensory issues. I have to be honest, though. What I'm about to write is something I've been hesitating to share because of the stigma attached to mental health issues and treatment in our society.
I am the biggest proponent of SPD being neurological in nature (and it is! Still doubting this? Read here), but I'd be remiss if I ignored the psychological struggle of adults and teens with SPD, especially those of us who went decades without an enlightening sensory diagnosis. This has been true for me, Queen of Anxiety, Feeler of All the Scary Feelings, Emotional Baroness Extraordinaire.
Clearly Unintentionally My Portrait
By the hilarious Natalie Dee (and yes I own the t-shirt)
Anxiety is something I've dealt with as far back as I have memory. In the Good Book of the Self, my first chapter would start: In the beginning, Rachel was anxious about literally everything. I don't believe that the anxiety materialized one day from thin air and settled like a vice in my chest. Instead, I now know that I had undiscovered sensory processing issues. I believe that I didn't understand why I shrank from bright, flashing lights or the moan of a car horn, and so I felt uncomfortable - both within my body and with my necessary response to these problematic types of input. I learned to avoid situations that might produce the same unhappy feelings, even fear them. Anxiety is something that I happened to develop while unsuccessfully searching for answers about my real behaviors and the source of my unique needs. As an aside, anxiety, depression, and other secondary psychological conditions are common in adults and teens with SPD, especially those of us diagnosed later in life. Whether it's the SPD mimicking these disorders or the presence of these disorders along with our sensory symptoms, many SPD adults and teens not only have to contend with the overwhelming or underwhelming sensory world, we also have to deal with how these experiences shape our feelings and behavior into a pattern.
Not knowing more than the external-facing leaves of my symptoms and unable to identify the neurological root, I was diagnosed with Panic Disorder, which seemed to explain the rampant anxiety and unusual episodes of fear, detachment, and overwhelming input that I now know to be sensory overload or sensory shutdowns, a phenomenon characteristic of someone with SPD or Autism. I was 14 when my anxiety was officially diagnosed, as misplaced and incomplete a diagnosis as this ultimately was: devoid of any sensory acknowledgement and incorrect in the form and manifestation of the anxiety itself.
Still with me? Great. And it's fine enough. I have SPD and related generalized anxiety, which you might expect from someone who has spent their life dealing with sensory issues but was unaware of them being specifically "sensory issues." Somewhere post-college, after the decade and a half of educational structure and the ability to anticipate life's upcoming turns, my anxiety became all-consuming. Think of it this way: if you knew that you'd be punched on a regular basis, but were never sure quite when the fist would make contact with your skin, wouldn't you flinch at every single motion? Wouldn't you hold yourself fast in the face of knuckle-cracking and cringe at each bent elbow? It's this way with sensory processing issues before the parameters of sensitivities have been revealed. Every moment was wrought with the fear of what the next moment in time would bring - of what, I now know, would be my reaction to potentially hazardous sensory input. How unsettling and detaching would the input be? How engaged would it allow me to still be with the world around me? Would I survive the next punch? I reached a point of discomfort so intense that it was met with tears and inactivity - if the entire world was riddled with the pockmarks of potential distress, why even try? Everyone and everything had become a stage for my sensory-based anxiety.
Enter the benzo.
Benzodiazepines are psychoactive medications used to manage everything from anxiety to insomnia to seizures. When I had stopped being able to engage with the world, a well-meaning psychiatrist prescribed them to me. Panic Disorder? Bam, here's a benzo. I vividly remember the warm fingers of the medicine taking hold when I took my first pill, crawling up from the base of my feet and unlacing the tightness in my chest. I took a gasp of air like a woman saved from drowning, and then I let myself get lost within the darkness. I slept the deepest, most restful sleep of my entire life.
You Might Even Say I Slept Like a MotherDucker
It's interesting to note that I've never tried a recreational drug or smoked a single cigarette in my 32 years. I joke with people that life with SPD is like a bad trip most of the time, and between that and needing rigid control of my experience in this body to survive my neurological ride, I can't imagine adding a drug to the mix . . . that is, aside from my beautiful benzo. We had a good thing going, that medicine and I. I battled the world each day and it gently escorted me to sleep each night. Regardless of my anxiety level that day - the wrath of my boss, the ceaseless chatter of coworkers on the commute home, the date of the hour, the boyfriend of the week - the benzo plucked me out of the sensory din and placed me squarely in a hazy, easy space of not giving a single damn. Even after my SPD diagnosis, navigating the weird waters of self-acceptance and understanding, clutching the finest occupational therapeutic tools of the trade, I rested well knowing that each night, I had the medicinal ticket out of my differently-wired system. I could shut my eyes and shut out the sensory world that held me hostage each day.
So why am I telling you all of this? Why am I digging up the long story of a sensory-sensitive woman, her history of diagnoses, and her psychiatric drug of choice? Because in January, I made the informed decision to slowly stop taking the medication - for my body's own sake and for the sake of my future health. It was a brave choice and not a decision that I made lightly. I am not exaggerating when I tell you that coming off of these medications - essentially withdrawing from them - has been a truly challenging experience. If taking the benzos was the shutting off of the sensory world, coming off of the benzos has been a cruel inverse. It's like I've turned up the volume on my (normally) loud, bright, busy, detached sensory experience. (BTW, for an amazingly-written perspective on the struggle of withdrawing from anxiety medications, this New York Times Opinion series is a MUST READ.) The symptoms started almost immediately - the creepy-crawly skin (normally an SPD staple - this time, intensified), the racing heartbeat, the difficulty swallowing, the difficulty breathing, the night sweats, the fits of anxiety, the intense sensory sensitivity, the difficulty concentrating - but especially, and most painfully, the unyielding insomnia that radiates through my bones like a cold wind. (I don't know about you and your SPD, but there's nothing that helps me cope quite like a good night's sleep.)
While most people struggle to overcome their attachment to benzos, this is especially difficult in a body with a differently-wired brain. We SPD adults and teens normally work hard to cope with a system that is out-of-whack, and this withdrawal process just sets the body and the brain even more at odds. It's a special needs withdrawal, if ever there was one.
The good news is that, for the first time in a decade, I'm free of the very substance that I assumed had been keeping me safe for so long. Sleep-deprived, most certainly. Exhausted, absolutely. Uncomfortable, for sure, but here and able to tell the tale. Who knows how long it'll be before I feel completely grounded again . . . but I forcefully urge myself to hang on to the knowledge that things will improve soon. I especially believe that this is true to survive in the moment. At 3am in the thick of raging insomnia and fighting off the chills and my own ceaseless and cyclical thoughts, I come unglued as I think everyone - neurotypical or otherwise - would do in this situation. I am angry with myself, the universe, the Sandman for abandoning me in my hour (or should I say hours) of need. I burrow under my weighted blanket, push my earplugs deeper into my ears, and readjust my weighted sleep mask counting the minutes until morning, my next unpredictable sensory challenge.
Are you an SPD adult or teen dealing with benzo withdrawal? I absolutely feel your pain and there's no shame in your desire to manage your SPD and other diagnoses without this type of medication. Check out these helpful links and don't forget to work with a medical professional as you taper your dosage down:
The Hidden Dangers of Benzodiazepines
Withdrawal from Clonazepam