Explaining dysautonomia: what works for me

The holiday season is all about spending time with the ones you love. And also about spending times with people you don’t know so well but you’re at the same holiday party so you might as well make small talk. Small talk that turns into “so what do you do for school/work?” that awkwardly turns into, “should I explain dysautonomia?”

This is my very short formula for explaining dysautonomia to others. It’s been working out pretty well for me, and hopefully it’ll work well for anyone who needs any help.

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Explain your dysautonomia.

My explanation for dysautonomia changes and develops weekly, just as my dysautonomia does. This illness isn’t static, it changes as frequently as I do.

My standard, quick explanation when I’m out and about is:

I have cardiac/neurological condition called dysautonomia where my autonomic nervous system which controls a ton of automatic functions gets very confused. The ANS controls your heart rate, blood pressure, digestion, et cetera. My subtype is called Postural Orthostatic Tachycardia Syndrome, and the most noticeable symptom is that every time I stand up, my heart rate jumps up at least 30 BPM, which is twice what it should. With so many things out of balance in my body, it causes extreme fatigue, brain fog, digestive issues, cardiac problems, body aches, and a ton of other problems.

In writing, it looks like a lot. But when you say it out loud, it’s not that bad. If someone gets bored listening to you explain a very complicated illness in 4-5 sentences, they’re probably going to get bored listening to everything else you have to say.

Feel comfortable with the words that you’re saying–if you feel comfortable using some doctorly words, go for it, but don’t forget who your audience is.

Contextualize it.

So all of these symptoms are listed, and someone can guess what it means for your life, but help them understand it further. What does it mean to have your heart rate jumping up 30 BPM all the time? What does brain fog mean for you versus someone else?

  • Because of the dizziness, I have to be very careful every time I stand up and with every step I take.
  • I have a lot of concentration problems and now have to take a reduced course load at school.
  • No matter how much I sleep, I’m still fatigued most or all of the time.
  • I’m on a high salt, high fluid diet in addition to taking several different medications at various times throughout the day.
  • I have to use a seat in the shower because the hot water aggravates my symptoms.

Make sure the person listening can see themselves in the place of a POTSie (or any other dysautonomiac). If you want to, you can really open up, or you can keep it surface level. It’s all about what feels right for you.

Share your goals and hopes for dysautonomia.

I usually share my “next step” for treatment or my latest update.

  • I’m trying a new medication and it’s supposed to help increase my blood flow and fatigue.
  • My new exercise plan includes physical therapy so I’ll get some support there.

… OR, say “I don’t know what’s next.”

I’m a fan of the ever-authentic answer, “I don’t know what’s next, we’re just playing it by ear.”

Leaving things open-ended with your dysautonomia story is almost more true to the spirit of this illness: none of us know where this is going because there is no cure yet, there are no ultimate answers for what to do to treat it beyond hydrate, salt, and exercise.

Above all else, go with what feels right when explaining your story. Share everything or share nothing, as long as you feel good about it.

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Do the damn thing

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