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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One thought on “The Social Implications of Dysautonomia

  1. The isolation that comes with an invisible illness is difficult. Through my invisible illness journey, I have found different groups of people. (1) people who support me, (2) people who started supporting me after they understood what was happening, (3) people that will never understand, and (4) people who will never support me even if they say they understand. It has taken time but I found as I have opened up and shared my challenges that group 2 is growing. I have also learned to not apologize for my illness and have stopped feeling guilty about not associating with people from groups 3 and 4.

    Hang in there and keep fighting for your health.

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