“‘I’m sick’. It’s a sentence we use plenty in our lifetime, especially during cold & flu season. Your nose is red, and your eyes are bleak, and your face is pale. And people often comment, ‘whoa, you look sick’. But how many people are sick without actually appearing to be?
The answer? Plenty.
I should know.
I’m one of those people.
The diagnosis? Postural Orthostatic Tachycardia Syndrome. I was diagnosed at age 16 with POTS by a neurologist, but my disease started a few years earlier.
I remember the first time I ever fainted, which is one of my main symptoms. I was 13.
It was in May of 2009, 10 years ago this year. Now, let me just say that over the last decade I have fainted hundreds of times. So many times, I can’t even begin to explain. And I honestly only remember what happened for a handful of those times.
But this time, I remember too clearly.
I was singing for my very first junior high Spring Concert with a group of my friends. My dad was helping us rehearse for the last couple months, and that day was really like no other. I remember we were singing, all 5 of us in a line in front of my couch in the living room of my parents’ house. My dad was sitting there cuing us with when to sing when I suddenly feeling really heavy and weird. My heart beat felt like it was skipping a step and I started to sweat. But I stood there and kept singing.
Then my eyes started to go black.
The next thing I knew, I was laying on the floor with my mom and dad both overtop of me and my friends all standing aside staring at me with concerned expressions.
That was the beginning of a very wild journey for me.
Now, when I faint, I go through the whole actually losing consciousness, but the aftermath is almost always the worst part for me. I go through this period of time that I called ‘autopilot mode’. Basically, I can communicate with you after I’ve ‘woken up’, but I look like I’m a robot. I’d be extremely monotone and drowsy, and I basically was a robot. This used to range anywhere from 25 minutes up to an hour.
And I would remember none of it.
But everyone else would.
And they were always quick to tell their version of the story.
That’s what would get me. The fact that I wouldn’t remember a single thing, despite being conscious and having conversations with people. It felt like a piece of my life was being robbed from me every time it happened. The memories weren’t mine. They were just blank spaces in time that everyone else had recollection of.
Flash forward 3 years and I’m 16. That’s supposed to be every girls peak in puberty, right? For me it was anything but. I struggled with your average teenage woes – boys & falling in love, school, friends and parents.
You know. The usual.
On top of that though, I was dealing with fainting and the depression that followed. No doctor could figure out what was wrong with me, and I had fallen in to this mindset that nobody ever would.
My peers and even adults would ask questions I didn’t know how to answer.
But then it happened. After multiple trips to the emergency room, multiple doctors telling me they don’t know what’s wrong, and even more embarrassing face plants in school, I saw a doctor who changed everything for me.
He ran a tilt table test on me, and with that you’re strapped to a table that moves you in different directions – more specifically laying you back and standing you straight up. The laying back wasn’t too bad. It was the standing straight that I remember to be the worst. I don’t remember what I said or anything, I just remember panic. I stood there completely still, and I remember wanting to cry. Now without any more specifics, I did end up fainting during that test, which brought me to my diagnosis.
The doctors were telling me this is something I could possibly grow out of, but they also told me this is something that I could have to deal with this the rest of my life.
Now I do not faint as much as I did in the earlier years. I kid you not, in high school my best friend was able to know I was going to hit the dirt just by looking in my eyes and studying my facial expressions from across the classroom.
Seriously, I fainted a lotback then.
I remember fainting in the bathroom at school and other students all staring at me while my best friend inspected me to see if I injured myself.
Or having my vice principal call an ambulance because I was showing new symptoms and the EMT’s wheeled me out on a gurney with a crowd standing there.
Or having my brother carry me through the hall’s unconscious to the principal’s office with people all watching.
I hated to be seen.
I hated to have everyone look at me when I was most vulnerable.
I especially hated that few took the time to properly learn more about me, and many made assumptions.
Eventually I did graduate with the class I originally started with, alongside my brother and best friend. To say it was hard is an understatement. But I did it.
My adult life hasn’t been easy either. But it’s become manageable.
I’m 23 now.
I take medications every night, and through the day as needed. 4/7 days of the week I have a headache, and I have a crippling migraine that has me completely bed ridden for 1-3 days every other week. I live on Gatorade and salt capsules cause electrolytes and salt are my fuel. I take antidepressants that help with my migraines, which in turn better my mental health. I take a rescue medication that’s for those days where it feels like my body has turned against me. I receive IV therapy to rehydrate me because I can’t always keep myself hydrated enough on my own, and sometimes I need the meds put straight into my bloodstream.
It’s a lot. But like I said, I manage.
But, despite living with this illness for a decade now, I still deal with some things I wish I didn’t.
I still get weird looks when I tell people I have this condition.
I still have to explain to people that I fight every day to get up out of bed because I’m constantly exhausted, even if I get 8 hours of sleep.
My last job, I still got pushback from the higher management demanding doctors notes and not allowing me to return to work until I had one because they didn’t believe I was sick.
I still have people confusing what I have with epilepsy & seizures.
I still have people look at me weirdly in public when I sit down cause I’m out of breath and need to shut my eyes to keep from fainting.
And you want to know the craziest thing?
I’m not even the worst case. Let me say again.
Postural Orthostatic Tachycardia Syndrome has been hell for me.
And I am not a severe case.
There are people who have it SO much worse than me.
People who are unable to work and support themselves.
People who can’t drive.
People who receive heavier treatment and a higher dosage of medication.
I’m blessed to be able to do things I know many people with my condition can’t.
But I still get the looks.
I still get the pushback.
I still have to explain myself.
What’s my point in telling you all of this?
It’s not for pity. Trust me, I’ve pitied myself plenty over the years and the appeal isn’t there.
I write this so that you might be more understanding with the person with the chronic illness. My illness is only one of the many that are like this. But this is one thing to be consistent – we may not always look sick, but the inner turmoil is more than you know.
We live in a world where kindness might not always be the first instinct.
But please, choose to make it yours.
Parents teach your kids the importance of compassion.
Adults, lead by example and let the young people see how it’s done.
Or better yet – young people, create a new dynamic for your future generations to live in.
Do your research.
Ask your questions.
The statement ‘ignorance is bliss’ can be flawed. If you have someone in your life with a chronic illness, educate yourself. Take time to learn and be there when they fall – figuratively, and in some cases literally!
The positive effect it can have could be life altering.
It was and is for me.
Having an illness, you can’t always see is hard. Do your best to try and not make it harder. It makes a world of difference in our lives, I promise.”
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