You get used to chronic illness, but you also never do.

It is a typical Tuesday morning, and my mother is knocking on my bedroom door. She comes bearing breakfast, carrying a vibrant red tray that holds a plate of fried egg and potatoes, a small, ripe orange, salt tablets and an electrolyte-filled water bottle. She’s wearing a smile and summons the sunshine, opening up my blinds to let the light in. “Good morning” she says, delivering a kiss to my head. She leaves me to wake up, and heads back downstairs.

I nibble on the kind food, waiting for my medicine to kick in before I can rush to the bathroom. I am grateful for her generous labor in the kitchen, aware of how much thought, time, and energy she put into making this food, but I also feel angry that I couldn’t walk downstairs and cook breakfast myself. I juggle this gratitude and resentment as I lazily circle my feet, stimulating blood flow and nudging my tired, cranky body to begin this new day. 

My mornings weren’t always so slow, and it didn’t always take an average of two and a half hours to get my body functioning, but everything changed after being diagnosed with a chronic, disabling health condition last December. Vaguely, I can remember the days where I’d spring out of bed, throw on my sneakers, and head out for a two mile run before school. Those mornings seem like ages ago, like memories that belong to someone else except they don’t. They’re still mine. I have to remind myself of this often.

 It’ll be at least another hour of circling my feet and waiting, an hour of getting up just to sit back down all the while chugging oceans and oceans of water. I’ve gotten pretty good at filling the minutes, taking up journaling, meditation, and games of Words With Friends, but some days I can’t help but loathe my demanding illness and the way it steals time from me, daily. Some days I’d trade the extra hour in bed in a heartbeat for those dingy sneakers and early morning runs. Some days I’m tempted to scream, “Screw it!” to the salt tablets and the water and the waiting, throwing on a pair of workout clothes and running out the front door. But I know I wouldn’t make it very far. I know with my condition and these early hours, I’d hardly make it to the living room, let alone down the street. On these days especially, my body feels like a cage.

It was December of 2019 when I was officially diagnosed with a common yet scarcely known medical condition. After over a year of debilitating fatigue, dizziness, heart palpitations, and other miscellaneous symptoms, my doctor confirmed I was suffering from a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (also known as POTS). This condition affects my heart rate and blood pressure whenever my body is upright, making it difficult to walk or stand for long periods of time. Things like dehydration, heat, or extended periods of inactivity can intensify my symptoms, which is why mornings can be such a particular challenge.

With POTS, every morning is a battle. After lying horizontal for eight hours, it takes a lot of time, salt, and fluid for my body to tolerate being vertical again. A good, long night of sleep means waking up dehydrated, and waking up dehydrated means it’s even harder for my stubborn, misbehaving nervous system to regulate my heart rate and blood pressure. On good days, my body will wake up within the hour. On bad days, it can take up to five hours before I am finally functioning. On flare days, I never reach “functioning” at all. It’s been almost a year and a half of these fluctuant mornings, and waking up into a flare day is still an infuriating letdown. 

On this typical Tuesday, I have physical therapy in the late morning. After all my tedious preparations, my mom and I climb into my car, her in the driver’s seat and me riding shotgun; a switch that is now routine. I sneak a quick glance at my mother sitting in what used to be my seat and feel my heart twinge with longing. As a twenty year old, I miss the freedom of sitting behind the wheel, and the independence that comes with a license and a set of wheels. I miss coasting down wide Texas roads, belting all my favorite songs, and mindlessly heading wherever I needed to be headed. These days, I’m scarcely headed anywhere, save physical therapy and my favorite local burger joint, and even before the entire nation locked down for a raging pandemic, I’ve been essentially homebound, my life revolving around physical therapy, doctor’s appointments, and sitting in the park. How did this happen? I wonder yet again. When did I become so boring and sad and crippled, and how do I make it stop? Turning my head, I look out the window, knowing the unchanged answer to these persistent questions. Still, I can’t help wishing it was different. 

I stroll up to the front desk, signing in for my session and beginning my usual small talk with the charismatic receptionist. “What did you do this weekend?” she asks, innocently and unassuming. Considering how it rarely varies, this question shouldn’t be so hard, but I find myself scrambling to think of anything significant. “Uh, honestly, I can’t remember. Just a typical weekend I guess.” I reply, paired with a basic shrug. My weekends are quiet now, given that I’m still quite physically limited and because of this they blur together, usually consisting of the following three things: reading, writing, and completing my at-home physical therapy exercises. It’s a routine that still feels novel and odd, another aspect of my new life I’ve yet to settle into, and I often find myself embarrassed of its stark simplicity; it’s painfully uncomfortable to admit how physically limited I currently am. 

My illness has changed many things about me, including what I can and can’t do, and this new life I’ve been thrusted into frequently feels like it was meant for someone else. Even in the forgiving privacy of my bedroom, I am constantly surrounded by pictures, clothing, trinkets and trophies curtly reminding me of the life I’ve had to let go of this past year. I can’t get dressed in the morning without seeing t-shirts representing programs and communities I used to be a part of, or hop in the car without seeing college bumper stickers that were once filled with pride and promise, but now burn with the sour taste of sorrow. Every new day of mine starts and ends in a shrine of my old life, while the hours in between burst with reminders and recollections of everything I’ve lost. For the past eight months, I have fumbled around my childhood home, trying to accept this new version of myself, all the while resenting that it even exists. 

I’ve become a regular at the physical therapy clinic over the past five months, consistently coming twice a week for my hour-long sessions. I’ve never really been a regular anywhere, and I certainly never expected it to be here, of all places. As I set up in the gym, waiting for my physical therapist to finish up with a previous patient, I take in my familiar surroundings and wonder how this accustomed routine can still manage to feel so foreign. A year ago, I was in class at a university I adored. A year ago, I was juggling homework assignments with rehearsals, singing Italian arias in practice rooms and wondering what musical might be chosen for the upcoming semester. Now I’m sitting in a gym at a physical therapy clinic, peddling my feet on a recumbent bike and doing exercises that are designed to help me stand in the shower and go to the grocery store. The change is enough to make me dizzy, or maybe that’s just POTS.

Despite the overwhelming change, I’ve discovered the remarkable capacity to adapt that every human carries within. I’ve learned that it doesn’t take long to latch onto the in’s and out’s of chronic illness, and I’ve quickly gotten used to the salt tablets and electrolyte drinks and slugging liter after liter of water. I’ve gotten used to my medication regimen, the slow mornings, even having to sit in the chilly, shorter showers I’ve begrudgingly been forced to adopt. But I’ve never gotten used to the loss illness brings, the persistent canceling of plans, and all of the sacrifice that comes with putting your health first. I’ve not yet gotten used to the novel post-diagnosis life, the “new normal” people speak about that’s never once felt normal to me. I trust one day it’ll click for me and I’ll find a way to live beside or without my illness, going through my days unchained, but for now, I’m still figuring it out, half heartedly trying to get used to things I frankly don’t want to get used to. 

I can get through a Tuesday with my eyes closed, and I can recite the sodium content in various different electrolyte drinks without missing a beat. Off the top of my head, I can tell you the average time it takes for someone to get diagnosed with POTS – a lengthy four years – and I can also probably crush you in a game of Words With Friends (I’m kind of a pro by now…). But the one thing I can’t do is get used to the realm of chronic illness, and all the sacrifice it demands. I can’t get used to the world of symptoms, the too many days spent feeling unwell, and the holidays and birthdays shared with my condition. I still have yet to settle into the unforgiving flare days, the laundry list of limitations, and all the stolen time that’s taken from me daily. I can’t, I won’t, and I don’t think I ever will.

You get used to chronic illness – after all, it is chronic – but you also never do.  At least, I certainly haven’t.