With it being the beginning of Dysautonomia awareness month and having had a pretty rough flare this weekend, POTS has been on my mind a lot lately. (Or at least more than usual, I should say.)
Because of this, I found myself knee-deep in a big, fat, snotty sob session this afternoon. It was as if the pitch-black rain cloud that’s been steadily building overhead parted, dropping bucketloads of rainfall on parched, crunchy land. It was the kind of cry that feels like a workout, that drains you but leaves you feeling lighter. Emptier too.
I cried because as much as I preach about hope, I still can’t believe this happened to me.
I cried because as proud as I am of my resilience, I’m exhausted of hearing the words “you are so strong”.
I cried because POTS is a lot to manage and tears are just the inevitable outcome of living with a disabling, chronic condition.
I cried because I don’t know what it’s like to go to college without ER visits and doctor’s appointments and dizzily wandering through hospital corridors alone.
I cried because some people get mono and get over it. Because they’re not on their third year of chronic illness, trudging through thick mud and grief on the twisty road towards recovery.
I cried because chronic illness is too much to deal with, and it’s lonely and isolating and even after all this time, scary.
I cried because if it weren’t for POTS, I would still be a music student, learning vocal scales for school, growing, refining, and polishing my craft.
I cried because progress is still so hard, even when there are people who congratulate and applaud you.
I cried because sometimes moving forward feels like a curse, because I have to bring all of this brokenness with me–this dysfunctional body that’s been through hell with its muscle twitches and tremors and dizziness and fatigue.
I cried because even though I’m doing better, recovery is still so tough.
I cried because on a bad day like today, POTS feels simply impossible to live with.
Today I also cried for everyone else who knows the pain of POTS. Who knows its physical, emotional, and spiritual toll, who’s participating in Dysautonomia awareness month right alongside me.
I cried for everyone who came down with one little virus and spent years of their life trying to recover.
I cried for everyone who’s left jobs, careers, schools and universities in order to prioritize their health.
I cried for everyone who’s sacrificed dreams, plans, and social events in order to tend to and cope with their illness.
I cried for everyone who’s ever had to choose between seeing a friend and taking a shower, who’s suffered through flares in dark rooms, alone.
Mostly, I cried for everyone who knows how much one single virus can change a life forever.
I don’t share this blog post as a way of seeking attention or praise. I share it because in order to truly raise awareness about a misunderstood disease, I must first be transparent about the reality millions of people face around the globe.
Chronic illness ain’t easy. It’s about as fun as it sounds. And I am a big believer in the power of positivity as well as the steel-like strength of unbreakable hope, but that doesn’t change the fact that chronic illness is a beast. A gruesome monster I, along with millions of others, never asked to meet yet live with day after day after day after day.
If you’ve ever battled the bullies disguised as disease, know that I understand. That I rage and cry with you, and for you.
I know how much of a warrior you are, and let me be frank–that’s not a term I use lightly.
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