what is dysautonomia? - a 🧵 from someone living with it #DisabilityPrideMonth

dysautonomia itself is not a true diagnosis, but rather a umbrella term for many different chronic illnesses, i do not want to get into my specific diagnosis online quite yet, but i still want to spread awareness for what i can

now the name dysautonomia is actually pretty self explanatory as it means “a dysfunction of the autonomic nervous system” which basically means your body struggles with performing functions that are supposed to be automatic

what does this effect? everything !!!! from the way your heart beats to bladder control to whether or not you digest your food, it can also cause extreme fatigue, breathing issues, muscle pain, the inability to self regulate temperature, and the inability to retain water

it is a relatively common disability, affecting more than 70 million people worldwide, which is why ppl sometimes determine it as a “not serious disability” but it can range from mild to severe and in very few cases cause death

dysautonomia can be something you are born with, something that you gradually get, or something that you get suddenly and so it is a very difficult disability for many people bc it can take years for diagnosis if their symptoms fluctuate a lot (which is common)

doctors also are typically unaware of it so it takes a long time to find specialists and it often is not treated by just one doctor but a whole team to work on heart and the digestive system and the psychological effects of it

there is also no one medicine or cure to fix it or even make it easier to live with, i personally am on many different prescription and over the counter medicines in order to be able to get out of bed on the daily

dysautonomia can be primary dysautonomia in which they are unaware of what is causing it or secondary dysautonomia where it is a symptom of a different illness (this is the kind i have)

we experience ableism constantly because we often cannot keep up with people or we will be struggling or loosing our breath and be told to “get in shape” or to “move” and the be pushed if we don’t move fast enough (both of these have happened to me by strangers)

it is also different everyday, which can cause many people to believe we are faking or being overdramatic, for example some days i can walk for miles, but other days leaving bed is the biggest struggle, many people are rude bc of it

my own personal experience: the first symptom i noticed was an elevated heart rate, my heart rate would get to 180-200bpm when i exercised, but i felt no other symptoms so i laughed it off. then it started getting worse and my heart rate would be 160bpm after i went up stairs

and i would no longer be able to breathe. everything elevated to where i am now, on beteblockers but my heart rate still has drastic changes (84bpm lying down to 134bpm standing; these numbers are from my doctors appt on thursday), having intense stomach issues where i cannot eat

some days. having constant fatigue and pain. and i was a part of a prestigious honors program at my school before all this, but i got kicked out bc i could not keep up with my grades this year as a huge symptom of mine is memory loss and brain fog.

i would dream abt getting hw done bc i would fall asleep while doing it, then it wouldn’t be done and i would get a 0 bc it was missing. it was extremely disheartening for me, especially bc i didn’t know why i was doing so poorly compared to how i used to do

it got me in a lot of trouble with my family and i was in constant trouble and unable to explain why it kept happening after i promised it wouldn’t. now i realize it’s not my fault and that i did my best and am proud of myself

tl;dr: dysautonomia is a dysfunction of the automatic processes your body is supposed to do and it causes a lot of issues for many ppl including me

for those who have dysautonomia out there: you are beautiful and loved and so strong. you know yourself best, so stay in bed all day if you need to, or go run a mile if you feel like it. do whatever it is that you need to do and know i’m so proud of you and i see you <3333

thank you for reading this whole thread, i realize it is long so i appreciate it a lot