Life with Sensory Processing Disorder
In support of Sensory Awareness Month, I thought I’d share what it’s like living with sensory processing disorder (SPD). If you have SPD, I hope this makes you feel less alone. If you know someone who has SPD or sensory issues, I hope it will help you understand them more. Either way, I hope that sharing helps someone with SPD feel better. Because suffering from SPD means it takes everything you have, every day, in order to survive.
For as long as I can remember, receiving sensory information causes me to have a primitive reaction. Touch makes me want to crawl out of my skin so badly, I scratch at it as if trying to get out. The sound of a knock on the door makes me jump from my seat and gasp for air. If the sound continues, I become frightened. Scared for my life. Paranoid. Then, I blackout. A smell, like fish or someone’s perfume, makes me enter into an altered state. Like when Bugs Bunny turns into a monster. My primitive dukes always up, ready for a fight.
Until the age of 35 (I am now 36), I just thought I was crazy. As I’m sure everyone around me did too. But here I am. Ready to share what happens to me. Because if it wasn’t for others sharing, I don’t know where I’d be.
Having SPD means that my nervous system receives sensory information differently than most, causing my brain to react instead of think and my body to be in a constant primitive state: I fight, I flee, or I freeze. Usually, I fight. Only after fighting can I begin to process the reality of the situation, but it is clouded with the emotion I must feel before I can finally think. Basically, I become murderously angry, I sob as if someone has died, and then I wonder what happened to me.
This doesn’t go over well in society, so I often have to suppress it when it happens. Or find a private space to process in. To scream and to thrash. To let the demons out. Many times, my anger is so ready to flow out of me that I have to frantically find a bathroom to go into to let it all pour out. Mental diarrhea.
Other times, when there is nowhere to run to, I check out. I either freeze, unable to respond to those around me, or I try to process, forcing myself to speak, saying the wrong words. Confusing others. Sounding curt and angry. Something those close to me tell me I do, but I only began to understand how much it affects others by reading the evaluations my college students gave me when I first started teaching.
Typically, I am only aware of the aftermath. Of the looks on peoples’ faces after witnessing a spell. Of someone being upset with me and not understanding why. Of finding myself on the floor, rocking and sobbing and wondering what happened.
When I am triggered, I have no ability to control what happens to me. It is as if someone else takes over, robbing me of my body and of my mind. I become a host.
I knew this wasn’t normal behavior, but no one and nothing helped. It was only after I started reading the journals I had written over a span of 20 years that I began piecing it all together.
I always knew I was different. My sensory issues make my life more difficult than what others’ lives appear to be. Sounds send me into a paranoid state, primitively waiting for the predator to strike around every corner. Smells cause a confused fog to take over. A fog that clouds my thoughts, takes away my strength. Like poison in the air. If a light is too bright or alternates its pattern, I become disoriented. Unable to speak or to function. If a fabric or someone’s touch bothers my skin, I feel nauseous, get hot flashes and need to rub my skin. I panic if people or objects invade my personal space.
I often explode without warning. Like a landmine.
I become ill frequently. With high fevers. Rashes, welts, hives. Upset stomach, acid reflux, leaky gut. Exhaustion. I used to faint. When I was younger, I ended up in the hospital for reasons that doctors couldn’t identify.
And it has always been difficult for me to engage with people. Their sounds and smells are often more than I can handle. I need to be rested and untriggered to interact. Even then, I get overwhelmed. I can’t process my thoughts quickly, and I’m easily distracted, causing me to either disconnect or snap, leaving others and myself confused.
People think that I’m difficult. See my disorder as a personality flaw — as something I can control. They are offended by my reactions to it. By my facial expressions. I was even written up for my facial expressions at a job I once had. I spent my entire life feeling misunderstood. Not to mention, crazy.
Desperate for some relief, I tried everything to help myself. I distracted myself with too many activities, entering into a manic state where I became numb to everything else. I tried cigarettes, drugs, alcohol. I tried moving states, changing jobs. I tried eating plant-based, gluten-free. I tried exercise, yoga, meditation. I tried every type of doctor you can imagine: a bioidentical hormone doctor, psychologists, psychotherapists, psychiatrists, gynecologists, endocrinologists, naturopathic physicians, chiropractors, massage therapists, a Reiki healer. I tried medication.
I spent over 20 years trying to get help before I discovered I had SPD. And the only way I figured out exactly what was happening to me was by reading, Too Loud, Too Bright, Too Fast, Too Tight, by Sharon Heller, Ph.D., and through the stories others shared. Learning what I have, giving it a name, has changed my life. It has allowed me to begin to take my life back.
I have only been learning about my disorder for over one year, but what I have access to is limited. There isn’t enough research. There aren’t enough resources. There aren’t enough doctors who understand it and who know how to treat it. There is help for children with SPD because it has been entered into the Diagnostic Manual for Infancy and Early Childhood (ICDL-DMIC), but it has yet to be entered into the Diagnostic and Statistical Manual (DSM) or into the International Classification of Diseases (ICD), so there is limited help for adults.
We need to spread awareness of SPD so adults can be accurately diagnosed. So we can get help.
After 36 years of being unable to think or to function, of feeling and acting crazy, I at least now know it is not me, it is my disorder.
But I still need help.
And so do millions of others.
If you would like to read more or for resources on SPD, please visit my blog, Life with Sensory Processing Disorder (#lifewithSPD), or my website, jennagracewrite.com, or follow me on Twitter, @jennagracewrite.