imagine having everything you loved to do, every activity, your own independence, stripped away from you and dangled just out of reach.
your physical abilities, dampened to that of someone more than triple your age. people who take the worst care of themselves surpass you. nothing you do will ever let you get back on top. or even be average. you’ll always be stuck at the bottom, unable to even shower fully without assistance.
no amount of conditioning training or therapy will ever get you back to how you were. knowing there is no cure or fix. only bandaids, that yeah, help a little. but often it feels like putting a bandaid on a bullet wound. or better yet, putting a cloth wrap on a broken bone. there is no visible wound, and everyone can see the cloth and assume it helps but it doesn’t. everyone sees you struggle, they say its in your head or you are just lazy. weak. and judge you. you can see it, even when they don’t say it. their silence screams at you. the glance your way, or the discomfort when you talk about it. or worse, their apathy clearly displayed in their body language and expression.
Or the frequent “well i dont feel good either.” they dont understand. they cant. for how could they? they have no beast like yours. everyone is different, but they view you as a mirror. however broken and dirty that mirror is. when it is in-fact - a window. yes, you see a person in it - but not a reflection. a different person than yourself. no matter how alike. but they perceive it as a mirror, all the screaming back you try does nothing. they think “how strange, im not screaming but this mirror is”
ignorance.
on top of the limitations you never had a choice of- the mental aspect reaches beyond your capacity quickly, and even at its lowest is still brimming at the top. even on the best days, you’ll always feel it. gnawing inside you - you think at first its something deep inside you but one day, slowly or suddenly, you aren’t sure, you realize it is all of you. no part of you is safe. the gnawing is always forever there - often the only one who will be. the one with you always - your disease. with you in sickness, killing your health.
what people dont see, is the entirety of the beast. they only see someone lazy, weak, and unwilling to “power through.” what they dont see is you are powering through. waking up, sitting up, and breathing is you powering through. when it feels as though your body craves nothing more than to become the decay in the ground. your body already is decaying - and you feel every moment of it. every beat of your incorrect heart, every ache, stab, and throb in places others don’t even recognize existence.
the memories of before haunting. little hints in those memories stalk you, and foreshadow the inevitable. daydreams of going back and shaking your young self - run further, push harder, do more, appreciate every step you can take unburdened. knowing you took it for granted. the ability to bathe yourself, feed yourself, clean your home. walking to the bathroom, getting out of bed, each activity so trivial back then you’d never think of it. now? those are luxuries.
going back to the beast gnawing inside - or better, the beast gnawing to leave your skin somehow as it has consumed all of you. mixed into it isnt just the physical aspects, and the weight they carry. its everything else too. all the struggles those around you share, money, work, relationships, everything. it weighs on-top. the worst part - when you have any of those go wrong, they weigh on-top of the thousand pounds of illness you already carry. when you cant even carry your own self - how can you carry more? how will you? the beast snarling inside pushing more of yourself out - taking its place as you. the light and glow of your own presence dims, but everyone expects a smile and twinkle in the eye. everyone expects you to shut up and carry on. why? cuz they have to. but they dont see it. they dont hear it. they dont know it like you do. they never will. but you know who does? the beast. it knows you because it is you. its always been there - since you were born - its been growing and evolving inside.
the weight of what everyone else perceives is heavy, but not as heavy as your own internal monologue. thats tenfold. because yes you have the illness. its there, and destroying you. but what if its not. what if this whole thing is in your head? what if you are lazy, weak, and useless like everyone else thinks. what if they are all right? but even with those thoughts always circling like vultures on carrion - you cant seem to dig yourself out. no matter how hard you try, you fall back down. you wont ever make it out alive or dead. youll always be stuck.
sometimes it feels like purgatory. torment in a place you dont know why you are there.
you were just living life, maybe happy maybe not, but existing in a way you never can again. now you are trapped, eternally no matter what. your regrets are that not of normal people. nothing crazy, just regrets of not appreciating being able to walk and breathe without pain. the memory of doing activities you love are hazy and feel so deeply foreign, and unachievable. they feel eons away, something you’ll never touch again. something youll always see others do, and ask while dancing around you “why cant you?” “surely you can do it - just suck it up”
maybe you try.
you try. and try.
trying. always. to do.
you’ll never make it. even if you do for a moment - you’ll pay. like a kid running from a parent - you know you wont get away forever, you’ll surely be caught. why run? only difference is the freedom you have for that moment is a taste that comes at a steep price. days, or weeks of pain and suffering follow the minutes, sometimes only seconds of normalcy. but those moments of freedom are what make everyone think you’re faking it. it only drives them to think “oh well if you can do that right now, why cant you always?”
what they never ever see, or allow themselves to, is the aftermath.
the pain, internal and external. the loss of independence afterwards. needing help for the most basic tasks. not being able to shower quickly. when your day must go in specific steps or you wont make it. when waking up is the hardest. once you do, you HAVE to eat to take medication, but to eat you must cook. cooking being a combination of everything difficult. standing, temperature changes, time sensitivity, and waiting. finally fed, you can shower. but showering is a combination from hell. hot temps, slippery surfaces, bending and keeping balance. movements that others can do no problem. movements and tasks that are similar to trying to climb out of a frozen lake, while the current below pulls you under. after fighting the shower, mostly clean now, you can dress and ready yourself for the day ahead. but now - after cooking and showering, you feel the beast inside howling and shaking. its angry, and doing more will only anger it. so you are forced with a paralyzing decision. do more and incapacitate yourself after, or rest now and not be in pain and suffering. you choose do more, because you have to work. you have to clean, and function. so you do. and you are followed by the dread of your consequences. you run out of steam, and arent able to cook again, or clean yourself up. you barely brush your teeth and on an empty stomach you crawl to bed. you forgot to use the bathroom - but you cant get out of bed now. so you sit. bladder hurting from it, knowing you’ll pay for that later too. sleep eludes you, its apart of the beast. its so loud and exhausting, you couldn’t possibly sleep. if you sleep, it will get you. you focus on breathing. the air is all around you, readily available, but you cant seem to get any. your deep breaths, shallow breaths, fast or calculated don’t give you what you need. you can’t catch your breathe - and the physiological response is panic. making it worse, but you dont react like someone else would. instead of real panic, you are, annoyed. oh this again? so annoying. itll pass eventually, or i hope it doesn’t, and i pass out from it. then ill finally sleep.
finally asleep, you dont truly rest you get an unconscious break from the pain, but you always have a night of fitful sleep. waking up with your heart pounding as if you were the losing prey in a hunt. no reason for it, no nightmare causing it, its just the beast inside, and you’re the prey. except you’ve already been swallowed.
these are the things no one sees. the struggles inside that cant be fought. the un-winnable war. one that you are forced to fight, even when you give up. an official title to this battle wont change anything, the medications being mere battles that are brought to a draw. the battleground never being even- always a steep climb for you.
Your own existence a cruel example of a Sisyphean Task. Life being nothing but an arduous, futile, burden. One that must be done, for it is the only one you have.
No matter how pointless it seems, there are small things that make it worth it. Whether it be new hobbies you found that are within reach, or finding ways around your beast. Things that do tame it, however temporary.
It must be the human condition that drives you. For we must exist, despite it all.
This is what its like living with a chronic illness like POTS.
