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Monday, October 24, 2011

Coming Out of the Sensory Closet

A few weeks ago, in preparation for my upcoming wedding (three weeks and counting!), I decided to send out an email to all guests, letting them know about my sensory diagnosis, and how it might impact the wedding. This is yet another huge step.

As an adult with SPD, nothing is harder for me than to admit something's 'wrong' with me. For 27 years, this meant telling people about my anxiety disorder, a co-morbid perk of not getting diagnosed with SPD earlier in life, and people are not always kind or understanding when it comes to the topic of mental health. I remember being told to just "try harder" when I was terrified about traipsing through public plazas as the setting sun richocheted admist echoing voices, or "calm down" when faced with a Broadway falsetto. And I tried ever harder with each coaxing and critique, striving to be a whole-self, when it was apparent to those around me that I lacked a certain something. (In retrospect, this has made me incredibly bubbly, driven, and motivated to help those suffering from mental health issues. I guess everything happens for a reason.)

Admitting to my anxiety disorder during my teenage years was equally as cripping as dealing with the anxiety. As an adult, I'd (externally, at least) come to terms with my situation. When I first met my fiance, I fessed up to my anxiety-related shortcomings mere days into our relationship. (Being the loving, open-minded, and caring person that he is, he took the information in stride, and proposed to me a year later.) I even started a blog at age 23 exposing life with Panic Disorder - another time when I came out of a mental closet to educate those around me.

But this particular exposure, to friends, family friends, and in-laws friends and family, was terrifying. Many of these people knew me as Rachel, the girl with strange anxiety and weird habits - I feared they wouldn't be able to take a new diagnosis, a larger discription explaining IT ALL.

I tested the waters first by emailing my beloved Uncle, Aunt, and two cousins (this happened to coincide with a wedding celebration for my youngest cousin, and I feared my abilities in participating in her spirited evening affair). I cried writing the email, unsure how I would come across, how they would react, and how it might change our relationships. Their reactions were heartwarming. When I showed up at my cousin's celebration (disorders and diagnoses be damned), my uncle enveloped me in his arms. He didn't need to speak a word, I know he understood. My aunt and cousins followed suit. When I started feeling sensorily-taxed by the events, two hours later, no one asked "why are you going? why can't you stay?" Instead, we all teared up, and hugged good bye; they thanked me for the monstrosity that was my effort to participate that night.

And that's the thing. Most people don't know how much you go through until you give them permission to understand. And once they do, people are very kind.

I sent out the email to all wedding invitees with the same pit in my stomach. Not only was I announcing the official miswiring of my brain, I was letting them know that as a result of my SPD, the wedding would have no hora. Very few Jewish weddings are devoid of a hora, but the honking of the music paired with the twirling of a hundred people, plus being lifted and tossed about in a chair, is enough to set me off. I want to feel my sensory best at the wedding. If that means no hora, some earplugs, my Wilbarger brush nearby, and blue-tinted glasses for when my vision gets sharp, so be it.

Each response was nothing short of a small miracle. One by one, couple by couple, people emailed me to tell me how strong, brave, and beautiful I am for 1) Living with this (frequently) frustrating and under-appreciated disorder and 2) For sending out a mass email about something so tentative.

One special cousin, a nurse with a kind smile and an infectious laugh, asked me to make sure I don't become solely my diagnosis. How can I? I am many things: a fiancee, a daughter, a sister, a niece,  a cousin, a friend, a student, a writer . . . but I am also an adult with SPD. I will always be an adult with SPD. It is the hardest hat to wear, the heaviest of burdens. It sits by my bedside when I wake up and offers me my brush, and wraps me in a weighted blanket at night. We walk down the sidwalk together, twins with one body, dodging the bright, the busy, the loud, the wide-open. We always get to where we're going, even if a little worse for wear. In a matter of weeks, my silent SPD twin and I will walk down the aisle, and meet my fiance under the chuppah. I can turn behind me then, towards family and friends, and back towards my fiance and smile, knowing everyone watching welcomes me there, sensory disorder and all.

6 comments:

  1. IS IT TRUE ALOT OF PEOPLE THINK PEOPLE WITH SPD HAVE AUTISM? (FORGIVE ME IF I DIDN'T SPELL THAT RIGHT)

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  2. Many people on the Autism Spectrum have SPD, but the disorder exists as it's own, discrete condition as well, which is what I have!

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    1. Were you afraid when you told people that you had SPD that they would think you had Autism as well?

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    2. Great, thoughtful question! I have never had any social-related issues or difficulties related to things like emotional reciprocity or affect (like facial expressions, eye contact), so on meeting me or knowing me, it's not 100% clear what (if anything) is going on. If we meet in a bright, loud, busy place, people might notice that I'm very uncomfortable. I do usually tell people that SPD is common with Autism, but it exists alone, and this is the type I have. So maybe I do feel that I need to distinguish my variation of SPD from SPD present in Autism. It, however, doesn't make me any more afraid to tell people about my SPD. I started a new job this week, and I let my bosses and new coworkers know that I had a neurological condition affecting my ability to process senses, and I'd be wearing blue tinted sunglasses around the office (helps me to process in spite of harsh fluorescent lighting - great OT technique). Thankfully, it's all about inclusion these days, and everyone has been welcoming and accepting.

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    3. I really appreciate your patient and kind answers. You are very encouraging :)And I have sent up special prayers of thanks to Jesus for you and this blog. God Bless! Jesus Loves You!

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  3. I'm a special education teacher who got diagnosed with anxiety and ocd prior to starting my job and now they are thinking SPD is a big problem for me as well. It seems that it's correlated to my ocd but people say your general doctor can't fully diagnose you. I'm nervous to go to an OT because of my job. I'm afraid I'll get fired if anyone at work finds out. I feel like I can't come out of the spd closet as you say but when I took a test for it I checked out on almost all of it. Its something I've been struggling with my whole life and just now have a name for. Any tips on what to do at this point? I'm scared and confused.

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