Adult with SPD in AZ
by Miranda Kay Smith
My name is Miranda and I am a 26 year old suffering from Sensory Processing Disorder.
This disorder has nearly killed me, literally. Although it may not be a disease such as cancer it is very much like a cancer. If left untreated it gets worse and bigger as time goes on. If no one knows what the problem is it can not be treated. And if a disease is not treated, what is the result? I am the result.
I have had SPD since before I can remember. Only my mother can tell me when she first noticed there was a problem. She says that I would make faces and cry at the dinner table with my family when I was just a baby because of the noise they would make eating. I would only wear dresses and tights because pants and socks "hurt".
My mother took me to my pediatrician after several days of going directly to the nurses office after my arrival at the grade school. The school nurse and principal told my mother that if I was that sick I must go see a doctor before coming back to school. My mother explained my symptoms to my doctor and he simply said that whatever the problem was, I would grow out of. Well, I didn't grow out of it. It just got worse and grew bigger.
In junior high school I would go to the bathroom and just cry or sit in class and whenever a noise would irritate me I would dig my fingernails into my skin on my sides. The sniffling of my classmates would do hurt me so much that I felt like hurting them but instead I would hurt myself and pretend that I was hurting them.
At home, the sounds of forks or spoons on dishes drove me crazy. I would go in to my room, cry and blast my music to cover the noises. I would lay in bed at night and scream and cry because my parents were watching tv in the room below mine. I would have to make sure that the sound was completely down before I could go to bed but even after that I started to hear the high pitched noise that a tv makes when on and that drove me just as crazy.
By high school nothing had gotten better. The "disease" had grown so much and I became completely hopeless. I didn't care about anything anymore. I began hanging with the wrong crowd and was given LSD.
After I took the drug I felt better than ever before. My use of LSD and other drugs lasted throughout the rest of my high school days until a narcotic conviction finally stopped me. But I still suffered from the pain of SPD.
My family and I moved from our hometown of Chicago to Phoenix, AZ. Just before I had left Chicago I saw an Occupational therapist who said that I definitely had SPD but I could not afford more than the one session. She said that my case was so extreme that I would need therapy at least 2 times a week.
When in Phoenix I got on the states medical insurance. I went to an evaluation to see if I was sick enough to get coverage for the therapy I needed. I was told that it was not considered a disease and therefore they would not
cover it. I appealed and got the same answer.
Over the course of my teenage years I had seen a number of Psychiatrists and Psychologists. I was diagnosed with Generalized Anxiety Disorder, Bi Polar Disorder, Obsessive Compulsive Disorder- you name it they said I had it. Name a Psych medication and I have been prescribed it. Nothing helped but an anxiety medication that I have been on for over 6 years to take the edge off.
I am getting more and more sick. The disease is getting bigger. I hear the annoying chirping of birds, the constant sniffling of my coworker, the clicking of the keys on the keyboards at work. The banging of the dishes being put away at home. The sounds of food being chewed and the popping or cracking of gum. Even the sound of the blinds slapping together from the fan blowing them.
All these noises hurt so bad. It has gotten to the point where even if I can not hear it, I can see it and it is just as irritating. The blinding sun. Someone chewing their food, twisting their hair- anything that is repetitive is so obnoxiously irritating and painful.
My husband touching my arm makes my cringe unless I down a few of my pills. There is so many more things that irritate me that I know I am leaving out but I think you get the idea. It's everything.
I wear earplugs so often that my ears are so sore. They hurt so terribly but I have to wear them. I need help. I feel helpless and hopeless.
This has gone on too long. I am not a selfish person and don't like to be felt sorry for but it is not fair! Why was I born like this? What did I do to deserve this pain and irritation every damn day of my life?? I have tried to have faith but why would god do this to me?
It's not fair to my husband to have to put up with my dirty looks and the curse words that I mutter under my breath when he makes normal noises accidentally. It is not fair for those of us with SPD to have to handle this. For SPD to not be recognized as a disease is so completely ridiculous.
All of us that have SPD are sick with this never ending hell that may seem like nothing or weird to others but it is what it is. It is awful. I hurt. We hurt. We as the sick people can not make ourselves better on our own. We need help. Please.
I do not want the children who have just begun their journey of life to have to be like me. To never ever be fully relaxed or ever really feel happy and fulfilled. I just want to be happy. I want to feel good. I always feel bad. I don't want this disease anymore. I have prayed and begged for it to be taken from me. Something has to change. I am tired.
Physically and mentally worn out completely. I don't want to have to try to stick it out the rest of my life. Everyday I live for my children, my husband and my family. I just don't want to have to just deal with it anymore or just stick it out anymore.
I will not give up and will not live like this!