What would you guess that Sensory Processing Disorder is? It's pretty self-explanatory when you're just hearing the name it. It's a disorder where something goes "wrong" with the processing of sensory signals. But for a disorder that's so straightforward in its basic description, it's painfully rare to find someone who already knows what it is before I explain it.
The thing about SPD is that it can manifest in many different ways and you can fall on many "ends of a spectrum." You can be hypersensitive (overly sensitive), hyposensitive (under-sensitive), or sensory seeking (you don't get enough sensory input and go out looking for more). And for each of these basic areas of SPD, you also have all the different senses.
For example, I'm hypersensitive to sounds, touch, and light, but I'm hyposensitive to all internal body senses. I can't tell when I'm hungry, but I may be in pain if the volume to the music is up at a "normal" volume--or even a "quiet" volume.
When people do know what SPD is, it's still often misunderstood. A dear friend of mine thought the following for a long while:
"I always imagined that if people were feeling overwhelmed with sensory issues, they'd be huddled in a corner and crying or something. I hadn't realized that it's hard to tell." (Elizabeth M. )
The thing about SPD is that people can mask it. We can pretend we're not in pain when we are, we can pretend that we aren't craving for something more, we can pretend that we heard what you said when attention is drawn to it, but maybe we didn't. But that's all it is: Pretending.
Sometimes people will think that SPD "isn't real" or that we're just being "oversensitive." But they don't realize just how oversensitive we are.
SPD isn't something that we make up for attention—we don't claim to be in pain to try to manipulate you into doing something (at least, most of us don't)—we're genuinely experiencing things as pain-causing or whatever else. Perhaps we weren't trying to ignore you, but you didn't quite speak loud enough to overcome our struggle to process auditory information.
Sensory processing is something that I don't think is addressed enough. I've seen so many people who are having troubles with things and when I brought up that it might be a sensory issue, they insist, "I'm not having sensory issues."
Think about it this way: In the bright sunlight, we all wince a little bit. Our bodies naturally recoil from the bright sun, whether by squinting our eyes or telling us to raise our hands to block the sun from our eyes. Perhaps you may even describe it as physically painful.
Now imagine that, but WORSE. Imagine not only flinching back from it but a small whimper escaping you as your eyes burn. That's what SPD will do to a person.
I can't sleep with certain sheets. I will be up all night, in pain, whether I'm trying to fall asleep or not, if the sheets aren't tolerable. Sometimes they're fine, sometimes they aren't. Sometimes I'm more sensitive to them than other times. But I can be so exhausted that I'm falling asleep standing but as soon as I touch those sheets, I can't sleep.
We don't make up SPD because it's fun. It's not enjoyable, it's not pretty, it's not something we ever get positive attention for. If anything, when we speak up about it, we get "are you kidding me?" looks and condescending or patronizing "assistance" when we need help avoiding certain things.
SPD is really real, but the view of it is that we're crazy, we're making it up, we just want attention.
The truth is: None of us ever want the attention we seem to always get.
That said, there are wonderful people out there who are genuinely nice about it. And it's those people—the ones who escort you out of a loud place, the ones who help you set up a "safe" area in a public place before the event starts, the people who check in on you and ask if you're still doing okay, the people who care and know you aren't making things up—it's those people who make it worth it to speak up about it every once in a while.
It's those people who we wish there were more of.