Hanging off a ledge,
The aching hole beneath my dangling feet
is waiting to devour me.
I try to scream, but my breath is caught
as my fingers curl
around slippery thoughts
and jumbled words
and suddenly I’m falling–
tumbling faster and faster
into the abyss
Fact: Young adults with Dysautonomia often face such severe symptoms that they are left tragically ill and socially isolated during the prime of their developing lives. Because the symptoms of these conditions are often invisible to the casual observer, most Dysautonomia patients don’t look sick. This tends to lead to a lack of understanding and support for the person suffering.
Fact: A type of Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS) is estimated to impact 1 in every 100 teens before they reach adulthood. There are an estimated 500,000 to 1,000,000 people living in the United States alone. While the majority of those afflicted are young women, POTS can be found in all ages, genders and races (Dysautonomia International).
What is Dysautonomia?
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, temperature regulation, etc.
Blood pressure tanked, had a seizure of some sort (still mostly unknown how/why/what kind) and ended up in the ER. Bleh. Doctors never quite know how to handle dysautonomia, it seems. I understand, as it is an incredibly complex presentation of symptoms…but I still cannot help but be frustrated at times…
I work my very hardest to be “normal” and not to bring anyone down. However, I must say…
It’s indescribably disheartening to sit helpless as a disease detains you in the prison of your own body. You look back at your former life with nostalgic envy, realizing you took it all for granted. From the most elaborate vacation to a simple walk to the bathroom. Every day without pain or fatigue- when you had the potential to say “yes” to every exciting invitation instead of, “No, I’m too sick” to any suggestion at all…so many times that people cease asking altogether.
What I would give for the “normal”- even “boring”- feelings that many my age detest. I would love to get up early to the sound of an alarm clock jarring me out of a sweet dreamland for yet another predictable day of monotony. To get up out of bed, brush my teeth, shower, get dressed, eat breakfast…
To not have to worry about about medicines, treatments, injections, IVs, emergency room visits, hospital stays, dizziness, fainting, blacking out, heart palpitations, dangerously low blood pressure, vertigo, excessive fatigue, weakness, nausea, vomiting, dehydration, migraines, blindness, shortness of breath, tachycardia, hives, anaphylaxis…
To set out to enjoy another day of teenage normalcy instead of settling into the rigor that is the 24/7 management of an unpredictable and all-consuming illness, hoping that my well-disciplined routine will allow me one more day of maintenance and “just getting by.”
I am not seeking your pity- I am incredibly thankful for the life I have, truly, despite my limitations. But I do plead for your understanding.
Please see that I am not my illnesses: I am me…
I’m holding my ground as the army that is chronic illness pushes forward. It may have more weaponry and experience, but I have an amazing team, a little stubbornness, and a lot of untiring faith.