Imagine living in a world where your five basic senses—sight, sound, smell, taste, and touch—are out of whack. There is a distinct sense of imbalance of these senses (along with other, less known about senses) that you’re faced with on a day-to-day basis. What’s worse is, although your life is highly impacted by each day’s distress that you deal with, the Diagnostic and Statistical Manual of Mental Disorders does not recognize your struggles as a valid psychiatric diagnosis. This makes treating your symptoms almost as hard as you having to coexist with them. You are living with Sensory Processing Disorder, and there is little treatment and, certainly no cure for what you’ve got to deal with.
Sensory Processing Disorder, or SPD, is a disorder that affects the nervous system and the sensations that the body experiences. These senses include auditory (hearing), visual (seeing), tactile (touching), olfactory (smelling), gustatory (tasting), vestibular (moving in space), proprioceptive (positioning of muscles), and interoceptive (perceiving internal sensations). For each sense, a person can either be over-responsive (too sensitive), under-responsive (not sensitive enough), or sensory-seeking (looking for more sensation). If it sounds to you like a lot of parts of daily living are affected, you’d be correct. I know this first-hand because, I’ve been dealing with SPD my entire life. I’ve continued to deal with it—even at 20 years old—despite most research on SPD being done about children with the disorder.
Even though I’ve always had SPD, I didn’t really know what it was, or what it meant, until a few years ago. That meant that for the longest time, I felt completely alone in many of the symptoms and behaviors I had because of the disorder. For example, one thing that most friends I have know about me is that I’m an extraordinarily picky eater. I think there’s way more foods that I don’t eat than I do eat. I can say with confidence that I’ve got the food repertoire of a fussy three-year-old. The thing is that despite what most people think, I’m honestly not able to eat like a “normal” 20-year-old; I’m just too sensitive to the smell, taste, and texture of food. Often times, when I try a new food (which isn’t so often at this point), something about the food will make me feel so awful to the point that I can’t even swallow a bite without gagging. But having a limited range of foods makes it hard to go out to eat with friends without feeling awful because I can’t eat 99% of what’s on the menu.
My eating habits aren’t all that has been affected by having SPD. I have terrible posture because my proprioceptive senses are out of whack, which contributes to my chronic back pain. I have trouble making eye contact because it’s so painful for my eyes to stay focused on someone else’s eyes for a long time. I hate bright lighting to the point where I actively avoid doing schoolwork in the library because the lighting gives me headaches. Many emotional regulation issues that I deal with are also considered a sensory processing issue. These are just some of the many problems that I face every day because of SPD.
I think the worst part about having a disorder that many professionals do not recognize and most people do not understand is that I often feel very, very isolated and alone in my struggles. So I’m writing this piece not just to bring awareness to others about Sensory Processing Disorder, but also to let other people, especially other adults out there, know that they are not alone. Though the medical world is not usually on our side, our symptoms and struggles are valid and should be seen as such. In the past, I’ve been called “weak” because of my lack of coordination and my hypersensitivity. I’m here to say that I now see myself, along with other people with SPD, as incredibly strong.
I have learned to navigate a sensation-filled world, survive in it, and thrive in it; I do this all without the properly functioning seven senses that so many take for granted. Sensitivity is not weakness, and strength is more than what meets the eye. Sensory Processing Disorder can make life tough, but those of us who have it are tougher.
