If there’s one thing that I’ve learned living with a lesser-known, hidden neurological sensory disorder for 32 years (and advocating on behalf of others with this disorder for five, ever since I was diagnosed in 2010), it’s that many people ultimately mean well when they discuss your condition, even when their commentary suggests otherwise.
I often repeat this statement over and over like an ancient yogic mantra when I post about the quirky and especially challenging ins-and-outs of life with sensory processing disorder (SPD) and wait for the engaging discussion to begin, because there’s one thing that stops me in my tracks and takes me aback. It doesn’t always happen when I blog or share tidbits of my sensory life. It’s the epitome of “meaning well,” funnily enough, the tethering together of experiences and emotions; the holding of hands across the electronic divide, and I know it’s bound to happen eventually, as much as it rubs me the wrong way every single time.
It’s when someone with typical neurology reads about my sensory challenges and replies: “Me too.”
Let me take a step back and qualify this by saying that we’re all sensory beings. Think of the agitated grandma who shakes her cane at street youths, telling them to keep the noise down. Think of the beach-goer who shields his eyes from the sun until he can push his Ray-Bans onto the bridge of his nose. Think of the little girl who refuses to eat her broccoli because it tastes yucky. As human beings, every single one of us is perpetually engaged with our senses.
Our world is one based in sensation and perception, and most of us can move through it unscathed. We have our sensory preferences and dislikes, sure. Some of us live for the thump of the speakers at live concerts. Others wrap themselves in a cashmere scarf and curl up under a fluffy comforter. Many avoid crowds.
The difference, though, is that for those of us with sensory issues, our “penchant” for cashmere or “desire” for a loud baseline or “dislike” of crowds isn’t merely a preference that can be turned on and off at will. We are wired so differently that our prime directive becomes something like rub your fingers across all soft things all the time in all places regardless of societal norms or social graces OR press your body against the speaker to feel every single pulse and ignore the bouncer who wants to toss you out of the concert venue OR stay the hell away from the undulating crowd and cover your ears and shut your eyes and wish upon all available stars in the sky to be anywhere but here. Hence “disorder.” Hence “differences.” Hence “disability.” Hence “condition.”
In my sensory life, I live with (and respond to) many unusual needs. I fidget with tiny, handheld and fur-covered animal figurines all day because I find the input absolutely necessary to keep me calm and focused. I sometimes sit for hours in darkness because the very idea of a light makes me want to unzip my skin and hang it up on a coat rack. I lie on my back like a tipped-over turtle and cry my face off if I am surprised or feel overwhelmed. I lose the ability to process sound and sight and feel detached from my body if I take in too much sensory input, and I need someone to walk me back home until I can regain my processing abilities.
You too? I didn’t think so.
When a person with sensory issues tells you about a particular sensory eccentricity, remember that you’re not hearing the entire story because it’s complicated to paint the full picture of a scene wrought with sensory challenges. I pop bubble wrap before even unearthing the contents of a package also means because I am craving the tactile engagement and am desperately seeking this sort of input right now. I can’t stand the smell of raw meat also means because it is so foul to me that I find it painful and distracting to breathe in the scent, and it not only triggers other sensory sensitivities, it sends me into a shutdown. A sensory behavior never stands alone. It always emerges as part of a larger tapestry we call Living With a Differently Wired Brain.
I know you mean well. I know you would never tell a person mid-seizure that you’ve been there too, merely describing that one time strobe lights made you feel uncomfortable (unless you are actually prone to seizure activity). You’d never say to someone with Parkinson’s disease that your hands tremor, even if your hands sometimes do shake when you sip coffee (unless you actually have the disease). These are neurological disorders, too, as much as they vary. When you tell a person with sensory issues (whether SPD, autism or Asperger’s) that you experience the same things as they do, I believe you inadvertently negate and invalidate their experiences. Mine included.
So my neurotypical friends, what should you say instead of “me too”? It can be as simple as, “Thank you for sharing.” Speak words of support and encouragement about and to the sensory person. It’s hard to open up and be raw about something that’s had such a significant, personal impact on our lives, and yet, when we willingly discuss our sensory issues, we are making ourselves vulnerable. This is especially challenging for those of us who were diagnosed with our sensory issues later in life and spent many lonely decades feeling different and ashamed.
We share our stories with you to educate you, to echo the experiences of your children, your friends, your partner, your neighbors, your coworkers and your relatives; those who are sensory and hiding in plain sight. We speak for those among our ranks who are too young to express what they’re experiencing and need a voice. We share our stories to remind one another within our community that we’re not alone. We explain the complexities of our differences so that we can help others who are just coming to their senses realize the unknown thing they’ve been coping with for years has a name.
Personally, I tell my story to honor the little girl within me who didn’t know why she was so sensitive, particular and scared. I like thinking that somewhere back through the viscous haze of time, she feels the energy of me, her adult self, sidling up to her, putting her arm around her, and saying – quite appropriately, I might add – me too.
(One final note: if your “me too” moment is something else – if it’s an awakening because of something you’ve read about sensory issues, if it’s an epiphany – an ah-hah moment, if it’s the very thing that explains some unknown something that you’ve lived with for decades, you know where to find me.)
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness, and what would you say to teach them? If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
Lead photo source: Thinkstock Images