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.

Autonomic Dysfunction and Daily Life

I get a lot of search engine topics relating to how dysautonomia affects daily life.  I’ve decided to write about how it affects me, and why I’m disabled by it.  This in no way is a comprehensive description of autonomic dysfunction- each person has various ways that it impacts them more, as well as different triggers for their symptoms. This is just my situation…

I was diagnosed in 1996 after a tilt-table test (I was strapped to a table, and it was ’tilted’ so my feet weren’t bearing my weight, then monitored to see what my blood pressure did. It dropped to 44/16…. that’s not a typo).  I’d been passing out frequently, and my housemate (also an RN) encouraged me to get checked out. I kept thinking it was ‘just stress’ after returning from eating disorder treatment and trying to get into healthy routines.  Anyway, I had a neurologist who was familiar with dysautonomia, so that was really fortunate. Many doctors I’ve seen (before and since) look at me like I’ve made something up.

The episodes I’d have (when I was still working, and putting more strain on my body) included bright red flushed cheeks, chest blotching, blue tinged lips, and very pale skin everywhere else. Eventually, I’d pass out, and become extremely pale, with very shallow breathing- to the point that one boss thought I was dead.  During the ‘early years’ (in Texas), my employers were more willing to work with me when I had a desk job.  I’d be allowed to lie down, and then resume work when I felt better. When I moved back to Illinois, I was sent out by ambulance when I’d keel over. I’m sure it was to cover their butts, but it annoyed me to no end, and the ER they sent me to was horrible and cruel.  I ended up having to go on disability since I was having so many episodes.

My main triggers are heat and pain, which cause my heart rate to go up and then suddenly drop, and my level of consciousness to go down.  Exercise, or any activity that causes heart rate changes is a no go.  Cleaning my apartment is a SLOW process, and embarrassing that I’m not able to do a better job of it.  Eating hot foods in a ‘normal’ temperature environment causes problems. If I eat very warm food at home (where I keep the temperature around 62-66 degrees year-round), I do fairly well.  But eating away from home isn’t something that is pleasant to think about.

I’m in pain no matter what, which is a problem if I can’t keep it under relatively tolerable control.  I start passing out if it gets worse.  I have fibromyalgia and chronic headaches, and recently have had problems with my left shoulder muscles ‘pulling’ to the point that I can’t really use my left arm for a day or so until it gets back together.  I have to avoid anything that increases pain.  Laundry, emptying the dishwasher, taking out the trash, and things like that have to be paced.  When I do my main monthly shopping, I’m done for the rest of the day. It’s very painful.  I get many things shipped to my home, which helps with some bulkier items.  I live alone, and while my dad would help with as much as he can, I still want to do what I am able to do. I just have to be careful.

Being in environments away from home is extremely risky, and I have to wear an ice vest to avoid being overheated. I’m also waiting for an ice bandana, and have shaved off most of my hair, since my head just gets too hot.  I can’t tolerate doctor’s office waiting rooms, friends’/family’s homes, church, or just about any place that isn’t less than 66 degrees at all times.

Over the last couple of years, it seems as though the dysautonomia is getting worse. I have to be more careful about activities, pain, and temperature.  I don’t know if that has to do with the chemo I had for leukemia, or if it’s just the nature of the disorder. At any rate, I’m having to make more adjustments.  And, I’m having to let people help me more with getting my apartment straightened out.  I hate needing help (but I’m thankful for it).

That’s just an example of what things are like for me…