Monday, March 30, 2015

The Sensory Adult Goes Through Benzo Withdrawal

 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.

Lately, I keep thinking that I intimately understand Sherlock Holmes on the CBS crime drama ElementaryJonny Lee Miller plays the infamously brilliant detective whose struggle with substance abuse haunts him as he cannot help but notice every. Single. Little. Detail. In every space and in every situation he finds himself. Life with SPD is not unlike the life of Sherlock Holmes (three cheers for the overaware and the overstimulated!) - I get why he turned to something, anything, to quiet down the intensity of his experience of the world. In the end, didn't I do the same thing? With no urge or desire to use a substance, didn't I find myself looking for a doorway out from the bright, loud, in-motion, detached, energy-saturated life of my waking hours? Sure, it was anxiety that brought me to the benzos' door, but it was my unidentified and different interpretation of the sensory world that made the need for relief a must-have.

Hey Friend

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
Recovery Tips
Withdrawal from Clonazepam

Thursday, March 26, 2015

Introducing: The Inside View On Sensory Processing Disorder

I'm excited to share that the Sensory Processing Disorder Foundation and I are partnering on a great new project! Each month, we'll bring you an episode in a question and answer video series about what it's like to live with Sensory Processing Disorder, called The Inside View on Sensory Processing Disorder. I'm so thrilled so be your host!

Curious about life with SPD? Have a question that you want answered? Send an email to using the subject line "The Inside View on SPD." Not all questions will be answered, but I'll do my best to cover one or two in each video.

Our first video will go live next week! For updates, visit my Coming to My Senses Facebook page and follow me on Twitter.

Friday, March 6, 2015

Big Announcement!

Friends, I have very big news -


This week, I was signed by Sensory World, home of Temple Grandin and Carol Kranowitz, to write a guide about sensory issues! It is slated to be published in spring 2016.

Stay tuned for more information and thanks for your support!

Thursday, March 5, 2015

My Latest Article for The Body is Not An Apology

Hi CTMS Readers!

I'm excited to share that The Body is Not An Apology, an amazing organization dedicated to global and radical self-love, has posted another article that I've written about SPD to their online magazine - this time, about SPD and adulthood diagnosis. Every adult diagnosed with SPD in adulthood deals with a similar set of challenges and emotions as they begin to process what it means to have SPD. I've been there personally, and I know how scary and exciting this time can be for all involved. These are the sorts issues that I address in this article.

You can find the article, An Open Letter to All Newly Diagnosed Adults with Sensory Processing Disorder here.

Here's to even more advocacy efforts!


Tuesday, March 3, 2015

The Sensational Struggle and Success of SPD Teenagers

When I was 14, a series of unfortunate sensory events that unfolded over the course of a single evening (new place, nighttime, summer, bright lights, surprise) lead me into a sensory meltdown-meets-shutdown the likes of which my person had never seen before. One second, I was smashed between racks of souvenir sweatshirts and Quebec snowglobes, and the next (I swear), a wooden marionette and a French Canadian puppeteer were chasing me out of the corner shop, rambling prolifically after me in their native tongue. I was terrified. I couldn't process sight, sound, or where my body was in space, but I didn't know how to describe it at the time. I felt stuck in this dark pit of undefined inability - I was suddenly unable to function in a typical way. I couldn't take in a single stitch of information from my surrounding environment. It took the arms and confidence of my entire family to escort me back to the hotel that night, drained from this frightening new occurrence. I guess this is a thing that can happen to me, I realized, but it's not clear what this "thing" is and how to defend against it. This realization set me up for nearly a decade and a half of rampant, untethered anxiety and doubt about who I was and what I was capable of accomplishing. My diagnosis of SPD was still 13 years in the future.

The author was psychologically-harmed in the finding of this horrific image 

Teenagehood was a time when I not only couldn't make sense of my differently-wired body and brain, I couldn't make sense of my body's basic hormonal and emotional changes. I mean really, adolescence is no fun for anyone. Did you have an amazing puberty? Cause god knows I didn't. It was enough contending with the random moods and cycles - who suddenly loved who and hated who and who couldn't be trusted with a Lip Smackers or a secret - let alone my seemingly strange need to fidget and bear-hug and eat only soft foods. I cried at everything.

At the time, I wasn't aware that adolescence was just adding fuel to my (unidentified) sensitive sensory fire. While the connection between SPD and hormonal changes has yet to be studied, I would think that the simple act of altering the internal workings of an SPD body would send anyone with interoceptive sensitivities into a tizzy. We feel the slightest lub-dub of a heartbeat - can you imagine a surge of hormones? If neurotypicals morph into greasy, cranky, delicate people thanks to the change in hormones - without any extra needs for which to compensate and regulate - imagine how a normally extra-sensitive, extra-intuitive, extra-aware SPD teen might react to this sudden internal shift.

It looks something like this:

Differently-wired braiiiiins

Or maybe this:


Or even this:

Hello, new friend

We all know that adolescence is a transition from childhood to adulthood - from smaller, more localized activities, goals, and family-lead responsibilities to more expansive, more life-changing, more independent engagements. It's a sensitive time for every teen as they attempt to identify who they are and how they fit into the world-at-large. It's no wonder, then, that parents mention what seems to be an initial surge - or even a resurgence - of SPD symptoms during their child's adolescent years. There are suddenly new parameters to consider and new environments to tackle. New is typically scary for someone with SPD who keeps their life regulated to compensate for any sensory dysregulation, so imagine suddenly being flung into unfamiliar life territory as hormonal forces take over inside.


In my daily sensory travels, I've seen two major intertwined issues related to SPD in teenagehood:

1. Timing of diagnosis 

2. Ownership 

When a child is diagnosed with SPD earlier in life, parents or guardians shoulder the entire burden of awareness of differences and diagnosis. Think about it: three-year-old Danny is not going to say - hey, parent, I'm uncomfortable, and my behavior in this loud, bright, busy classroom is probably something we need to look into now. He's not going to assess his needs, contact local OTs, set up evaluations, and stick to a sensory diet. Little Danny is going to make vrooom vrooom sounds as he races his matchbox cars around the kitchen. In childhood, the onus is on the adults to take the diagnosis, make peace with the information, and make adjustments so that Little Danny grows up in an environment that makes him feel comfortable. 

(As an aside, in this way, SPD adults and parents of SPD kids have much in common. We each must come to terms with the meaning behind the sensory differences and diagnosis, and institute changes ourselves - both neurologically and psychologically - if we want things to get better. We're all responding to this new information through the lens of our life experiences so far. What does this mean for me? What does this mean for my kid? Because of this, we're both strong, natural centers of advocacy.)

In teenagehood, we're in a tricky, complex place when it comes to sounding the diagnosis siren. We're not yet self-sufficient, we're not yet primarily responsible for our well-being, and what we need has to pass through the parental filter and approval process before actually happening. So imagine finally having the right words to explain how we're actually feeling inside - something we couldn't muster in childhood when we didn't know any better - and not being sure if we should say anything because no one's ever noticed out-right before. Imagine knowing what works and what doesn't, what we need and what makes us recoil, but feeling uncertain - the way that hormones make the best of us uncertain - of what we're experiencing and especially of what should be done next. And then, go tell a truly caring, loving parent that there's something going on inside of you that cannot be seen in quite the same way as, say, a broken arm; something that the parent hasn't previously identified as crucial or invasively problematic. Go point out the habits you've learned to hide from your family for a decade and a half because they're just so unusual. 

It's a strange waltz: the typical self-conscious teen finally having the guts to come clean about behaviors they themselves don't even understand and the doting parent who undoubtedly recognizes the teen's sensitivities, but has yet to come to terms with these issues or decide if they're worthy of major concern. There are shades of embarrassment here on both parts, of shame - for the behaviors and the needs and for being "different" (teen) and for not acting on these issues sooner and the question of a child's "perfection" (parent). (My son is the apple of my eye, there's no way that he has neurological differences!) This takes the complex language of parent-teen-communications and spins it on it's head.

An anonymous 18-year-old with SPD wrote the following to her mother, and it's an excellent example of the parent-teen-relationship with regard to SPD in the teenage years. (Btw, thanks to Anonymous for sharing this with me - and with all of you - you are a truly amazing human being and I am so happy to know you!):

SPD is like having a bug on your skin. It might look like I just caught it, like it just landed on me, but it didn't. I'm just dealing with it on a bigger scale each year - the places I go, they get bigger and bigger. It's like if a bug jumps on your skin, you aren't just going to leave it there - you are going to flick it off. It's like that when someone touches me a certain way, I want to rub it off my skin. When I was little, a hug felt great because - well, I was small and the pressure on my body was just perfect, but now that I am bigger, it throws off everything, and when no one is looking, I have to rub my hands on my skin. You never knew that I rubbed off touches or covered my ears to keep out the sounds or rocked in my room privately because I knew you would yell at me for doing that kind for stuff, so I hid it. 

There is this feeling like I have to run into a wall. Remember when we had those two couches, one across from each other, all the way across the room, and I would run and smash my head into them like a bull? Same idea. As I got older, sports took care of that feeling - I felt grounded doing the tumbling class. It's the best I had felt in years and I was truly happy.

Remember when we went to that wedding and I "acted up"? I was so overwhelmed. The band was too loud and the people - well, I was afraid that they were going to touch me and make it feel like that bug was back on my skin. I retreated to the bathroom a couple of times because it was so bad. At that time, I wish someone did understand me. I wanted to be able to act mature and grown-up, but I couldn't. And you say I've been okay at birthday parties, but a wedding isn't a birthday party. Weddings are over my tolerance level. Concerts are over my tolerance level. Being at school, tolerating people, trying to look "normal" - ever since I was little - it's made me a people pleaser, hence trying to hide the rubbing and the covering and the rocking. To please you, I suppress things. But it's so tiring. You just burn out living like this.

In terms of ownership, a diagnosis of SPD in teenagehood is split between the teen and parent. Not entirely responsible for their ultimate well-being, but too aware to be completely disengaged, SPD teens don't always take the lead in their diagnosis and treatment. I've spoken to many parents who can't figure out a way to rouse their sensory teen into ownership and don't feel comfortable taking complete ownership of the diagnosis themselves. This means that for some teens, their sensory symptoms - heightened by the hormonal surge and internal sensitivities - fall quietly into an untended chasm. Unchecked, sensitivities get worse and even become engulfing. Questions are asked about how they'll survive a school club meeting, let alone college. 

This is who I was in my late teens - undiagnosed and unsure of myself and my differences. I'd like to say that I was ultimately successful (this post is, after all, The Sensational Struggle and SUCCESS of SPD Teenagers), and in some ways, I was. Still unaware of the root cause of my anxiety, I finished high school within the somewhat narrow parameters of my difficulties. (I did act in the high school's two-night production of Grease! which was one of the most amazing and terrifying sensory events of my life, but that's a story for another post.) I went to college and was on my own for the first time, and jumped from social situation to social situation, trying each to see what fit and felt comfortable. Instead of experimenting with substances (why bother when many days with SPD feel like a bad trip?), I experimented with my abilities - could I tolerate a concert? Sometimes, in smaller venues, if I was feeling well that day. Could I handle a big party? Maybe, if I stood with my friends in the corner, and left before I felt completely drained. I laughed and went for homemade ice cream, hosted movie nights and laid with my friends under budding trees, studying. I graduated a year early, eager to return to my more familiar, more contained life. 

Teenagehood is a temporary state of transition from childhood to adulthood. It is a strange time of change and movement into the unknown. We are suddenly more aware of our place in the world, and yet we are peering out at the larger world safely from the familiar confines of home and family. We can almost touch who we'll be and how we'll handle the future, but not quite. In an SPD teenagehood, I would argue that success lies in the survival - in the maintaining or even thriving in spite of the issues of hormonal flux, ownership, parental acceptance, and self-understanding. It's in the moving forward and the staying patient. It's in the willingness to believe that the hormonal haze will clear, the unfamiliar will be revealed, and in the transfer of the reins of personal responsibility from parents and guardians, a stronger sensory self will appear. 

The author in 2001 at age 18 before her high school graduation