What It's Like for Me to Live With Sensory Processing Disorder

I hear a sound and plug my ears so hard it hurts, but I can still hear the noise. So I cry.

I pull the shirt over my head and try to keep it on as long as possible, but I rip it off and hug myself. So I lie there on the ground naked.

I put my feet through the holes of my pants, but I wiggle out of them before I get halfway. So I put on shorts even though it’s snowing.

I sit in the front seat on the bus, but when someone sits behind me, I move to the back. So I sit alone with my head in my knees.

I go to my friend’s house for dinner and they say I can look in their fridge for something to eat, but I don’t like any of it. So I convince them I’m not hungry.

I’m not like the others around me, but I remain full of confidence. So I’m happy despite my struggles.

I learn more the older I get, but it’s OK if I fall down sometimes. So I’m getting stronger every day.

My mother tells me I never stopped crying as a baby. As I grew up, I wore snow boots in the summer and the same dress every day to preschool and kindergarten. I wasn’t like the other kids. Eventually I was diagnosed with sensory processing disorder (SPD), tactile dysfunction and obsessive compulsive disorder. I tried a collection of medications and an even longer list of therapies. Now I’m a junior in high school, and my problems haven’t gone away, but I’ve learned to cope better. There are certain triggers that set off each person with SPD. The main ones for me are clothing and many noises. Someone in the room whistling can set me over the edge, and if someone paid me to wear jeans, I wouldn’t do it. The tricky part is the triggers can change.

Many people still don’t know about SPD. Even if you ask someone who has it, they might have trouble explaining it. I always tell people, it’s like when my brain receives sensory signals, and instead of giving them a green light or thumbs up, my brain says “Stop, no, this is bad.” But SPD exists, even if people don’t know about it, and it doesn’t just affect young children — it affects people of all ages and genders. Know that when we throw tantrums or seem to act inappropriately for our age, it’s not because we’re immature. We’re experiencing sensory overload.

But unless you have SPD, I don’t believe you can ever truly understand. Sometimes our friends and family might try to empathize and say, “Oh yeah, when people chew with their mouth open that really bugs me too.” But the truth is, they don’t know or feel what we do. It’s just not the same, and that’s OK. We appreciate any love and support we get. If you know someone with SPD, support them, be there for them and please be patient with them.

If you’re living with sensory processing disorder, know you are not alone. At times it can feel like we are, but this story is proof you aren’t. Find your coping methods and utilize them. If you’re in school, consider an IEP or a 504 plan. If you’re out of school, consider confiding in a coworker who can be there to help during a sensory overload situation. Create a area of your house where you can go and relax when things get tough. Stash a pair of earplugs or stress ball in your purse. Don’t give up; the obstacles you face are not impossible to beat. This is not a battle you should have to fight, but your only choices are to fight it or to let it control your life.

In April, I’ll be 18. Officially an adult with SPD. I’m thankful for the community that has started to build, and that I’ll join. I have sensory processing disorder, and I’m stronger because of it.

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