Tuesday, January 20, 2015

Everyone is bugged by something! So what's the difference?



When someone who is baffled by SPD inquires about it,  it sometimes goes a little something like this : "So what if you don't like the seams on your pants! I don't like the sound of nails on a chalkboard. Just because you don't like something does not mean you have a condition!" 

Other times, people ask a genuine question:  "A lot of people are bothered by sensory things, at what point is it a condition?"


It's true; nearly everyone is bugged by something. Lots of people do not like sounds, feelings, tastes, etc. Take the chalkboard example; how many people hate the sound of nails on a chalk board? The difference comes down to whether or not it affects their ability to function in daily life. Someone with SPD struggles SOOO much with sensations that they sometimes cannot get through the day! They may not do well in school; they may have a hard time being near people; they may have difficulty performing their work duties. This is all because their mind and body are fighting so hard to cope with sensations. People without SPD are usually still able to function, and possibly even ignore the sensations that bother them. 


I often say that, for me, the world is like an assault on my senses. This may be true for other people with SPD. It's difficult to ignore things in the world that feel like an assault on your body and brain. A young person you know with SPD may cry a lot, hold their ears, hit others, pull off their clothes, throw their body against the wall, scream, scratch till it hurts, grab at things constantly, etc. These are all examples of how a little body might try to expel the terrible feelings associated with SPD. 


Here's an example from my childhood:

I was about 5 years old and I was at a restaurant. I had to use the restroom so my mom took me. After doing my business, it was time to wipe. I remember wiping... and wiping.... and wiping... but I still just did not feel dry! I kept wiping and wiping. My mom, of course, asked me what was going on and I explained my dilemma of not being dry enough. She was supportive. She came in and tried to help me decide when I was dry. Pretty soon, however, my mom realized that other people had entered the restroom and that they were waiting for our stall. I could hear the tone in her voice change as she urged me to stop wiping. I could not stop. I NEEDED to feel dry. I felt desperate to be dry! I broke into sobs and my mom became more flustered. The wiping was starting to hurt.. I cried harder. But I still could not stop. It was as if the lingering feeling of wetness was crawling into my skin and seeping into my brain. It was like a burning, nagging pain; it was swallowing me whole. I wiped and wiped and wiped.... it hurt so much...I sobbed and sobbed... but I kept going. My mom was choking back tears. I could always tell that she wanted so badly to help me get rid of the sensations, but that she was also aware of our surroundings, the time, other people (the other important things in life that parents keep track of) so she knew she had to pull me away somehow... whether or not the sensation had been dealt with. She also knew that the longer she let me sit in a sensory storm, the worse it would get. As much as I screamed, kicked, and cried while she pulled me off the toilet, I needed it because I was never going to be dry enough. I never wanted these things to happen. I always felt guilty after a sensory storm. They often occurred while I was doing something fun or interesting that I did not want to stop doing, but once a bad sensation got a hold of me, it would not let me go. 

This example illustrates the difference; people with SPD struggle with sensations to such a great extent that it affects their ability to function. It may affect their relationships, their jobs, their schooling etc. It is not something that can just be "ignored" or "dealt" with. People with SPD need support, patience, a caring team, and lots of love. Love definitely helps :). 


Thoughts? Questions? Does this story sound familiar? 






8 comments:

  1. Hi everyone! Feel free to share your thoughts, comments, and/or questions about this post here!

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  2. Well thought out and presented. Look forward to your journey

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    1. Thank you! I'm looking forward to sharing more and hearing from others as well!

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  3. Thank you for sharing your story.

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  4. Thank you for sharing your experience Paula. Your blog will do a lot to educate many people on this sometimes hard-to-understand topic. As we are now learning about many other disorders, I think this one also does not have a black and white of either you have the disorder or you don't. I think there is a continuum - for myself there are days or periods of time when nothing bothers me or if something does it is not unbearable, and other periods of time when the smallest things will have the biggest, most function-deterring impact on my everyday life. It's also interesting to note that, at times, these differences may also be due to moods or other life factors that can accentuate or dampen the effects. Anyway, thank you for sharing your knowledge and experience, keep on doing so as it will do a ton of good to the world!

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    1. That is a really good point; I agree that it's likely SPD is more of a spectrum! Hopefully, the medical community will explore this more and begin to define that spectrum so that it can be included in the next edition of the DSM (not that I always love definitions, but I do think it's important to get SPD into the DSM, and unfortunately, that requires a clearly stated and outlined definition). I also absolutely agree that mood and other life situations play a part in amplifying or minimizing our sensitivities! Thank you for sharing your thoughts!

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  5. It was very interesting to read about your experiences as a young child having to navigate these challenges so early on. I guess it always bother me when I step out of the shower and I go to put my clothes on and my back is still wet in areas or I am washing my hands and water goes down my sleeve or my cuff gets wet, but these are in no comparison to the extent that your "wetness" or absence of "dryness" wreaked so much havoc on your brain. Its seems that this experience was also something your parents must have had to adapt to and without much support from resources about SPD at this time, they were just as lost... I am so glad you are putting this out there, as I really think one's lived-experience can be so much more powerful a resource than research and percentages...You Go Girl!

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