A Day in My Life With Sensory Processing Disorder
The world around us gets captured by our senses and interpreted by our brains automatically, not by conscious choice. However, if you have Sensory Processing Disorder (SPD) like me, your brain misinterprets sensory information and responds to it in unusual ways, which we can’t control. This can make SPD difficult to understand or explain, even when you have the disorder.
I noticed at an early age that I struggled in unique ways, but I didn’t know why. I never experienced what “normal” was like, so I couldn’t communicate what was wrong. My frequent and sudden meltdowns also troubled my parents and teachers, but my complaints were so irrational I was often labeled as an “ornery brat” or a “strong-willed child”. Doctors also misdiagnosed me, and dozens of medication trials brought no relief. Fortunately, after four decades of chaos and misunderstanding, I found the right answer, when I was diagnosed with SPD.
SPD is not a different set of preferences, or disliking certain flavors, colors, or sounds. Nor is it just a distraction. It’s extremely difficult and often debilitating. It impacts every area of my life: physical, mental, emotional, and relational. It’s also not something I outgrew. I’ve just learned to handle it a little better (most of the time).
In an effort to help others understand, I documented a typical day in my life to give an up-close glimpse at SPD from my perspective.
Mourning the Morning
7:00 A.M. - The alarm goes off and my stomach instantly drops like I’m on a roller coaster flying down the first big hill. I like roller coasters, mind you, but not when I’m lying in bed. I also love my job but I wrestle with dread about going, because I know the day won’t be easy. It’s time to buckle my seatbelt and go.
7:20 A.M. - As I leave the comfort of heavy blankets and walk into the light, I almost always feel a jolt of electricity across the top of my brain. It’s like a tidal wave of déjà vu that makes me dizzy and nauseas. I have to sit down or hold on to something until it passes, which usually takes 20-30 seconds.
8:00 A.M. - Getting dressed also has its challenges. Many textures and fabrics make my skin feel raw, as if it were turned inside-out with my nerves exposed. Unfortunately, I can’t wear t-shirts and Spiderman pajama pants to work, so I pick out something that’s somewhat survivable. I’ll never win any fashion awards because comfort is king in my world.
8:45 A.M. – I arrive at work. Making it through the parking deck unscathed is like navigating land mines, so I take a deep breathe. Unfortunately, like most days, other people are wearing hard soled shoes or heels, so every step they take echoes across the cement and collides with my body, which pierces my gut. I walk as quickly as possible to get inside. As soon as I get to my office, I exhale. It’s the only safe place in the building… thanks to my HR department for converting a storage closet into an workspace, and thanks to my doctor who submitted ADA forms to get my special accommodations.
Chaos and Cafeterias
12:00 P.M. – By lunchtime, I’ve made it through several meetings and I’m excited about the work, but I’m physically drained; as if my power supply was unplugged, or my operating system was forced to shut down. My thoughts shift from creative thinking and become scattered. When I fumble for words and find it difficult to communicate clearly, I know it’s time for a break. I retreat to my office and eat lunch alone. I just don’t have it in me to attempt the cafeteria. I almost never do.
Meetings and Meltdowns
2:00 P.M. – By mid-afternoon I’m physically hurting. Simple things like rustling papers and people typing cause my spine to curl with discomfort. Several people are talking at once, which makes me anxious. Even the clock on the wall torments me with ticks and tocks. A hint of perfume singes my nostrils and stings my eyes. I feel sick. I want to hide… but I also want to participate the meeting, and not fall behind in my work. I try to convince myself I’m okay, and I’m not going to die. Then the person next to me starts shaking their foot, and someone else starts waving papers like a fan because the room is warm. These repetitive movements in my peripheral vision are too much to handle. I start getting tunnel vision. My senses are overloaded!!! Panic is unavoidable at this point. I need to escape. I need to escape right now!
2:45 P.M. – A co-worker sees me standing in the hall. She must notice the distress on my face because she asks if I’m okay. I don’t want to sound like nut case, but all I can manage to say is, “I can’t find a way out!” My tears begin to fall as I look at the sunshine and fresh air on the other side of the glass. I can’t figure out how to get there…. even though I’ve walked through the same door thousands of times. I’m too discombobulated to think straight. So much for not looking like a nut case.
Sleepless in Solitude
6:00 P.M. – By the time I get home, I’m totally spent. If a friend or family member wants to meet for dinner, or even just talk on the phone, I rarely can. I have no words or energy left. I need at least 4 or 5 hours of quiet comfort to relax from the day. Otherwise, I won’t sleep. If I brave the elements and go out on a work night, I always pay for it the next day. I call this a sensory hangover, because every muscle in my body feels sore and my skin aches, which makes it even more difficult to get through the day.
10:00 P.M. – I go to bed, but it always takes a few hours to fall asleep. On a good night, I’ll get about 5 hours of sleep, but conditions must be perfect. This requires a heavy blanket, and a really cold room, with a large fan for white noise.
1:45 A.M. – I’m still awake, but way past exhausted. For some reason the neurons in my brain think they’re at a rave, so they want to party until dawn. I consider impaling myself on a sword just to make them stop, but I don’t have the energy.
3:00 A.M. – The approximate time I finally fall asleep.
7:00 A.M. – Alarm. Ugh. Here we go again. Buckle up, Bucko!
Perks to My Perception
Despite my daily challenges, there are also benefits to how my brain processes things. For example, I can consume a lot of complex information and quickly visualize solutions in my mind. Even as a kid, it was easy for me to grasp new concepts in school. I’ve always had an insatiable curiosity and appetite for learning. I also enjoy painting and drawing, which are great ways to make use of my unique perception.
I believe we’re all uniquely wired for a purpose. That purpose is meant to be shared with the world, NOT drive us into isolation from it. People with disabilities like SPD just need the right support, so we can harness our sensory superpowers and use them for the common good.
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At UPS, Jennifer Allison designs applications that allow customers to complete complex tasks that feel simple. Inspired by her personal experiences, she leads her UX team with a rare philosophy: designing solutions for disabled users will ultimately improve the experience for all customers. A user interface designer by day, by night, she is an artist. She is an avid painter, and has published several coloring books featuring her work. Jennifer graduated from the American College for the Applied Arts in Atlanta with a bachelor’s in commercial art. She is known by friends and fans online as “Rambunctious Kid.”