Still trying to figure out what I'm doing

by Jennifer
(Utah, USA)

I'm a college student from Utah and was diagnosed with SPD about four years ago. I've got a lot of stuff from this checklist, but my biggest problems are with touching and sound. It's been kind of hard. This is something I didn't know to expect, and it's frightening when someone suddenly tells you--"this is what you are, this is what's wrong with you, this is how you're always going to be." Especially when the person telling you this doesn't know much more about it than you do.

My skin is very sensitive, and there is never a moment in my life where I don't have an itch. It gets worse when I'm stressed out, which I am all too often. Also, for me it is very difficult to accept touch, especially on my back. This is hard for people around me to understand. People who don't even know me will touch my back if they want to get my attention or are trying to move by me. People who do know me but don't understand touch me in the back to say hello, or as a gesture of friendship. It's so hard to respond politely to that, when it feels less like a friendly gesture and more like a physical attack.

Sometimes if I lean forward while sitting next to a friend, that person will proceed to try to give me a massage or scratch my back. It feels like being attacked by a tarantula--I have to fight an instinct to scream and fight in self defense. The strangest part to me is that almost any time I ask someone not to touch me, their reaction is "are you sure?" Sometimes after I've asked them to stop they start right over again, as if they can't believe I wouldn't want to be touched.

My hearing is also very sensitive. I can't use headphones without getting a headache, and loud or high pitched sounds are very painful for me. Some people are upset when they loose the ability to hear higher notes when they get older--I am looking forward to loosing the ability to hear the high pitched sounds made by computers and electronics and some cell phones that other people can't hear at all. I've gotten a reputation for screaming and clapping my hands over my ears when someone turns on music that is set too loudly--sometimes that's worse than my problems with touching. Most people are puzzled when I have problems with being touched, but when I react badly to sounds they just laugh at me.

Maybe it would be better if I knew more people who were also going through this; when I was first diagnosed, I did some research, but at the time I couldn't find any mention of adults with SPD. I'd hear about it in kids, but it almost seemed like they all magically "got better" before they reached my age.

I don't have anyone that I can really talk to about these things outside of my immediate family, where my younger siblings also have SPD and possibly my parents as well. I guess that's better than being totally alone, but I still don't have age peers who understand what this is like. I don't know older adults who have been through this, which is harder--my parents both have SPD, I think, but it manifests differently in them than it does in me. Which means I have questions that they can't answer about what it will mean to grow up this way. What happens if I get a boyfriend, or get married, when I have problems being touched? Should I tell a potential employer about my problems? How much should I explain about my problems to my friends who can't understand what I'm going through?

I don't know. I don't know much at all. That's had. That's why I'm studying music therapy right now. People don't have answers for me, but someday I want to have answers for others. I mean, somehow I've survived this long. So there must be something I'm getting right, that I can show someone else someday.