The Social Implications of Dysautonomia

It’s so embarrassing to have physical reactions to relatively non-threatening stimuli.  My autonomic system has a very itchy trigger, and I have to limit what I expose myself to in order to avoid a considerable fight or flight reaction.  I can tell myself all day long that a situation isn’t any big deal, but if I get a ‘startle’ response, it’s out of my hands.  This can include something as stupid as reading something highly critical and ‘attacking’.  In my head, I know it’s no big deal- my heart rate doesn’t agree.  SO, I have to put walls up.  It doesn’t matter if it’s a stranger, friend, or family member – if they are ‘high risks’ for triggering a startle response, I can’t be around them or interact with them in any way.  Most of the time that’s no loss… but sometimes, I do miss the person.

Imagine how you get that ‘heart stop’ feeling when you’re startled suddenly and intensely.  That’s what it feels like, but it won’t stop.  If I can’t get the changes in heart rate stable, I end up having to deal with how to avoid passing out.  That becomes a safety issue- not just something unpleasant.

It’s embarrassing, and I’ve never really explained it to people, as I anticipate dismissive comments telling me to just get a grip and stop being a wuss.  I wish it were so easy.  The biggest part of my social isolation is related to temperature issues and having to stand for very long.  Pain is also a problem.  But the ‘simple’ interactions, and God forbid, disagreement (which intellectually, I have no problem with) can lead to some nasty hours of trying to get things back to my usual state of decrepit.  SO I isolate.  It’s not like I can wear a list of instructions on a t-shirt telling people to just be civilized around me.

Most of my interaction with people is online- and that is no less a problem. In some ways it’s worse, since people don’t censor themselves into respectful conversation… they just say what they want with no concern about being decent.  I know that nothing will improve with that anytime soon- if ever.  People are just rude and hateful.  SO, I ‘ban’ myself from most interaction, and block people when needed.   I don’t like it, but I have to be on constant guard, to protect myself from as much ‘startle’ as possible.

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