Today is day 3 of Dysautonomia Awareness Month, where we share our story with Dysautonomia.
First, what is Dysautonomia? According to Johns Hopkins Medicine, “Dysautonomia is not a single disorder but rather a broad term that describes multiple conditions resulting from failure of the autonomic nervous system. This section of the nervous system controls automatic body functions, like heart rate, sweating, bowel motility and breathing. There are at least 15 distinct dysautonomias; the most common are neurocardiogenic syncope and postural orthostatic tachycardia syndrome (POTS).”
My story would take up an entire chapter (or three), so I will try to cut it down. I have multiple conditions due to Ehlers-Danlos Syndrome and Dysautonomia is one. I have never not know life without Dysautonomia. It used to be so bad that if stood up to grab something, my heart rate would go from 50 to 150 in a matter of seconds. I was left untreated and uneducated, living my teens and twenties without proper management. I have multiple forms of dysautonomia, which is partially what led me to getting a pacemaker.
Even though I smiled and had a beautiful day today, last night at 1am I went into an arrhythmia, followed by an adrenaline surge, shivering, poor circulation (with pale extremities and lips), and a spike in blood pressure—all triggered by my digestive system and high pain level from overdoing it earlier. This set off a domino effect in my nervous system, leading to a fight-or-flight response. I used to go to the ER for these episodes, but I found that it was often more harmful than helpful, as the staff was unfamiliar with my condition, which led to health PTSD and delayed care. So instead, I took my emergency meds, put on my robe and heat pack, focused on my breathing, and monitored my blood pressure until I finally stabilized around 3:30am. I woke up at 6:30am and started my day, unphased. This is my normal.
I don’t want pity. I’m not strong or anything extraordinary—I’m just sharing my story because advocacy equals awareness, and it’s also ACTIVISM. This is why I’m back in school. I’m sick of millions of people being dismissed and unheard. I raise awareness for those who are desperately seeking answers but aren’t being seen or listened to by their healthcare providers. The medical field often operates under the mindset that if you hear hooves, think horse, not zebra. But for zebras like me, we’re here to challenge that and make a real difference in healthcare. We need to break free from the years of waiting for a diagnosis and push for earlier treatment and better care.
I should have had a pacemaker 10 years sooner. My heart had regularly fallen in to the 30s in my sleep, with documentation of as low as the 20s. I spent far too long with high heart rates as well, just stuck in rhythmic chaos. Now, in my 30s I am living with that irreversible damage of medical neglect.
I hope that I can help even just one person. This is why everyone’s story matters.
