When I tell you ‘I’m sick’, it means I’ve had a flare recently and it hit me hard
When I say ‘I’m fine’, I mean ‘I’m not, but I don’t want to talk about it’
When I assure you I’m okay, I mean ‘I don’t want to worry you’
Because I am not fine. I am not okay.
I’m chronically ill.
Chronic illness speaks of hospital beds and IV bags floating on their coat rack, saline solution dripping downhill and into my arms,
But that is not what my chronic illness looks like.
My chronic illness is showers taken sitting down, and water that cannot be too warm.
My chronic illness means no door is fully shut, so someone can hear me when I fall.
My chronic illness means my bedroom is now merely the room i sleep in at night, because it’s too exhausting to go up and down stairs more than once a day.
My chronic illness is doing ridiculous abdominal exercises before i can stand up without falling back down.
My chronic illness is salty snacks in every pocket of every bag i carry, and bottles of water with electrolyte powder clouding their clarity.
My chronic illness is four different medicine sorters, each with a different combination and permutation of pills to all try and do the same thing-
To help me.
My chronic illness is called POTS.
Postural orthostatic tachycardia syndrome
A form of dysautonomia that means my body doesn’t know how to function properly
My chronic illness means no I don’t want your pity, but yes I need an arm to lean on sometimes
My chronic illness means no I don’t want you to have to be a caretaker, but yes I need you to know my symptoms so you can tell if I need help.
My chronic illness means I’m sorry I’m such a burden
My chronic illness means yes I have to use a wheelchair sometimes and no I’m not okay but yes I can walk sometimes because yes, ambulatory wheelchair users do exist.
My chronic illness means I’m sick and tired of being sick and tired, of seeing the nurse more than my friends, of going to doctors appointments more often than school, of sitting on my couch, unable and unwilling to get up only to fall down again.
#PosturalOrthostaticTachycardiaSyndrome #Spoonie #MentalHealth #AmbulatoryWheelchairUser