Why my embracing my sensory and sensitivities is not making them up.

So when I was diagnosed with EDS it was a huge learning curve for me. Learning that things that I’d lived with for years were not normal and that it was ok to say that these things lead to pain or stress or both. I knew that I had something and was diagnosed as hypermobile early on but it was everything else that goes along with EDS that was the learning curve for me.  The clumsiness that had always been laughed at was actually caused by my wonky body and some of my phobias like being scared of heights were actually caused by my proprioception (fancy word basically meaning where your body is in the space) problems. Even my dizzy spells, that I have I’d been having for as long as I can remember, are actually down to my POTS and not the “hyperventilating” or even the “attention seeking” that my old GP had been for years saying they were. However for me one of the biggest things I’ve learnt is about my sensory processing disorder. 

Sensory processing disorder, for those of you who don’t know, is (in layman’s terms which is all I can use properly) where your body misreads the sensory signals you get and so things feel different to the norm. This was a huge curveball for me. Allowing me to realise that feelings I’d just thought everyone had weren’t actually normal. The fact that certain smells made me really sick wasn’t what everyone felt when they smelt unpleasant things (this is the case for lots of others but I also got almost panicked by this feeling too). The reason that some foods I didn’t like because of the textures and especially that the texture that I felt was bizarre to me, like beans have too many textures, was normal for someone with sensory processing disorder  (along with the other things not in isolation).  The feeling of burning that rubbing buttons left and itchy on seams that most wouldn’t feel wasn’t right.  They might be uncomfortable for some others but they weren’t like they were literally burning into my skin or the severe itching I felt, almost like I had hives. This and various other things was a turning point for me. I understood that it was ok to feel these things, that they weren’t what everyone else felt. It was freeing, allowing me to acknowledge that it was real and was happening and that I was allowed to say that I couldn’t put up with it any more. 

Now this meant that to some outsiders that I was making my symptoms match the illness as opposed to the other way round. There still are a number of people I know don’t believe me and think that I’m trying to make myself sound worse than I am. But it wasn’t that, I just now understood that these were symptoms not normal or in my head (e.g. not made up as they are a misfiring of nerves and misreading of signals from my brain).  I could now say I didn’t want to wear certain things that were uncomfortable to me. I could tell people that the texture of something was weird without thinking that I was just strange. I could acknowledge that places like doctors surgeries and hospitals did put me in a panic, that I was in sensory overload. There were too many senses that I couldn’t process going on at once, I simply couldn’t process a person talking to me unless they were speaking directly to me because of that overload.  

I also, as well as knowing why I’m feeling these things, can also acknowledge the things I know can relax or soothe me. Where I used to doodle or fiddle or tickle my skin because I liked the feeling, I now know to be a sensory seeking behaviour and one I know is relaxing. I have purchased fiddle toys to take with me and these greatly help to stop the panic.  

In allowing myself to feel these things I have opened myself up to those who don’t believe me, who think that I’m making these things up and who think I’m attention seeking. But I know, and my family and real friends, that actually I just have learned that my eccentricities are part of a condition and that condition has a name. I’m just allowing myself to have the tools to calm myself down and learning how to deal with a body that processes it’s sensory signals wrongly and that is ok. There will always be doubters but I know that I have sensory processing disorder. 

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