Chronically Catherine: Let’s talk about the “C” word: Chronic

Let’s talk about the “c” word: chronic.

I mean, there is another c-word to describe my feelings toward having a chronic illness, but I’ll let you fill in the blank.

The other big “c” in health conversations is cancer, which can be considered a chronic condition depending on the type. But other chronic conditions, such as lupus, type 1 diabetes, rheumatoid arthritis, immune deficiencies, Ehlers Danlos Syndrome, dysautonomia and more, hold the same weight — all deeply affect long-term quality of life. 

And just so we’re on the same page here, our pals over at the Centers for Disease Control define a chronic illness as “conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both.”

For now, let’s talk about the word “chronic,” the word that accompanies the description of a disease but is so rarely unpacked — like ‘OK, great, I have a chronic disease, but what does that mean for the rest of my life?’

If you Google the word “chronic” and shimmy over to Mr. Merriam and Webster, you’ll get the following definitions: 

a) Continuing or occurring again and again for a long time

b) Suffering from a chronic disease

c) Always present or encountered (especially: constantly vexing, weakening or troubling)

d) Being such habitually

While all of these definitions are accurate, they give me that feeling of when insurance companiesrandomly deny you a medication you’ve been on for years: Deeply dissatisfied. If you were to show me these definitions before I was chronically ill, I’d be like: “What do those definitions tell me about what it’s actually like to have a chronic disease? What does a diagnosis of a chronic disease mean for a young person like me? Where are the juicy, real-world details?!”

So, I’d like to take this opportunity to present some more accurate (better) definitions to submit to Merriam-Webster’s 2022 dictionary: 

Dear Mr. Merriam and Webster, 

Hi. My name is Catherine and I have a cacophony of chronic health conditions and, as an expert in living with chronic illness, I must point out the serious misgivings in your definition of the word “chronic.” I am here to add to your definition because, as it stands, it is highly unsatisfactory. Here are the additions you should make:

Chronic, an adjective meaning:

a) Finding pills anywhere and everywhere — on the kitchen table, in your bed sheets, in between the couch cushions, on the floor of your car, on the ground outside your car, at friends houses, in the bottom of your purse; 

b) Procrastinating showering by lying on the floor and scrolling through dog videos while in your towel because showering is utterly exhausting;

c) Measuring your energy with spoons;

d) Always having emergency medication on hand in a cute, unassuming zipper pouch and opening it to reveal you’re carrying a whole pharmacy with you everywhere you go;

e) The magical moment of profound, unspoken connection when you meet someone who also has chronic illness;

f) Having a purse for your infusion pump that strangers compliment, thinking it’s a new and trendy side bag, while you’re in line at Dulce; 

g) Having the same pair of pants in three different sizes because you never know if your new medication’s side effects will result in weight gain or weight loss;

h) Experiencing the levitating bliss of accessing your port yourself for the first time;

i) Learning which of your friends and family are in for the long run — some who show endless compassion, and some who get compassion fatigue — and being OK with those people falling out of your life;

j) Always keeping sleeves of saltines and ginger ale within arm’s reach;

k) The absolute devastation when you put on your sterile gloves and then accidentally touch something;

l) Waking up every morning and before even opening your eyes, scanning your body to see what hurts or what’s out of place; 

m) Existing in and fighting against a constant state of anxiety that something, anything, may worsen your pain and symptoms; 

n) Navigating the everyday, three-dimensional, chess-like complexity of coordinating your own care and not being able to put it on your resume;

o) Being on a first name basis with “Dale the Pharmacist” who jumps you to the front of the line when he sees you because he knows it’s hard to stand for long periods of time;

p) Strategically positioning yourself during sex to make sure you don’t exacerbate your chronic neck pain;

q) Experiencing profound moments of humility and humanity from providers who give you their cell phone or call just to check in, nurses who gently bathe you and drop what they’re doing to come any hour of the day and friends and family who see you for your strength, personality and resiliency, but who also lift you up in daily moments of frustration or pain;

And last, but not least, the most important definition of chronic illness:

r) A state of mind of never giving up and never giving in.

Obviously, the list could go on, but I digress. Thank you for considering adding these more representative and accurate definitions of “chronic” to the dictionary. Also, please do not forget to cite me. 

Sincerely and fabulously yours, 

Chronically Catherine

Writer’s note: Feel free to reach out to Chronically Catherine if you’re also a student of different abilities working to coexist with daily adversity without losing sight of your fabulosity – [email protected] or @itschronicallycatherine on Instagram.

Catherine Ames is a junior writing about life as a young person coexisting with chronic illness. Her column, “Chronically Catherine,” runs every other Thursday.