I think I’ve figured out my superpower… collecting diagnoses. You know how Thanos spent years traveling the universe collecting Infinity Stones? So, yeah, same premise, but instead of cosmic gemstones with supernatural powers, I have medical records, prescriptions, appointments, and an alarming number of passwords to patient portals.
Listen ya’ll, if I can’t make fun of myself and my chronic illness, then I will drown in complete sorrow.
The Avengers came face to face with some pretty harsh stuff. Not being diagnosed with a rare genetic disease at the age of 20 harsh, but still, they did save New York City from a bunch of villains numerous times. How many Avengers movies are there?
This might be coming from my mini Avengers Marathon I’ve been having by myself in the midst of my body trying to kill itself over the past couple of weeks, but I think us chronic illness friends and The Avengers have more in common than you think.
Welcome to The Marvel Cinematic Universe of Chronic Illness! ✨
We Have Actual Infinity Gauntlets… sure, they may not open portals, control minds, or reshape the physical laws of reality, but I think ours are pretty cool. Your first stone? The Diagnosis Stone! Congratulations, after being gaslit by multiple doctors, going through a series of tests, and your labs coming back absolutely normal, you can now put a name to why you’ve been feeling so crappy! (Again, it’s illness humor!)
Your first stone is really the start of em’ all, once you collect one, they just unfortunatley just keep coming……
The Specialist Stone - The ability to summon a new doctor every time you develop a new symptom. I lost count of how many doctors I see, many moons ago because honestly, there’s a lot, but I guess that just means my whole body is basically being watched like a hawk, so I guess that’s a good thing, right?
The Symptom Stone - The last time I saw my neurologist, I was reading off my phone all the new symptoms I had been feeling within the last six months, and she said, “Oh, you have a list!” Tell me I’m not the only one who goes to see their primary care doctor with a whole list of questions like why is this part of my body that shouldn’t be popping, POPPING?
The Medication Stone - You probably know more about medications than a pharmacist at this point. “Do you want a pharmacist consultation about this medication?” “No, that’s okay, I think I got it.” This is your seventh time you’ve been to Walgreens this week to pick up medication. Next time, go get a Dutch Bros, treat yourself!
The Insurance Stone - Everybody’s least favorite stone, but we had to finish the collection. “Your doctor prescribed this.” “Great!” “Your insurance denied it.” “Why?” “Because they can.”
And finally, the Appointment Stone. Basically, it controls your calendar, giving you free time for a random Tuesday, four years from now, between 2:30 pm and 2:45 pm. But that doesn’t mean you won’t be in bed because, of course, your only day off from appointments is a flare day.
And introducing the limited-edition Infinity Stones, including but not limited to: The “But You Don’t Look Sick” Stone in Hot Pink!, The Fatigue Stone, where you feel like you haven’t slept in days after taking a shower on hair-washing day which is available in Folklore Grey, and the Let’s Google It Stone that gives you the ability to diagnose yourself with 14 diseases before breakfast that comes in Life of a Showgirl Orange.
So we have our Gauntlet….wonderful! Now, the Avengers have S.H.I.E.L.D.; our team has MyChart, because nothing says superhero quarters like messaging your doctor at 2:45 in the morning when you can’t sleep because the pain medication is not working. Again, just kidding!
The Avengers have S.H.I.E.L.D., the highly trained and sophisticated organization that has one job: keep the heroes alive. And we have something pretty similar: a team of specialists. In all honesty, I had a doctor tell me once that all of the specialists I see, even though I dread all the appointments, are all a part of my care team; a team that wants me to be the healthiest, happiest, and strongest I can be.
Neurology. Primary Care. Cardiology, Electrophysiology, Pulmonology, Physical Therapists, Mental Health therapists, etc., and just like S.H.I.E.L.D every person has a very different, but very vital role. They keep the whole operation running with as few bumps as possible.
I joke with my family that I talk to my doctors and specialists more than I talk to my friends, because even though it’s fun to joke about having our own S.H.I.E.L.D. or Avengers, there is nothing funny about real diseases. With a real disease come real appointments, real symptoms, real test results, and sometimes real fear and definitely real burnout. But I’m so thankful that I have a real care team in my corner.
And then Avengers Assemble… but instead of Bruce Banner turning green, Natasha Romanoff doing some crazy backflip kick maneuver, and Captain America sending his shield flying… we are the superheroes. We are saving the day, or maybe our day?
I don’t know about you, but I’m in my pajamas more than I am in regular clothes; sometimes I can’t get out of bed, and last time I checked, you can’t really defeat Ultron under a heating blanket.
The Avengers get to go home after saving New York (for the seven billionth time), but we, we have to wake up in this body again tomorrow. The body that actually feels like we went head to head with whatever space villain the Avengers are saving the world from this time.
But I will tell you this face to face — every time — You. Are. A. Superhero.
Not every person can live with what you’re dealing with; not every person can endure the pain, the fatigue, the appointments, the scary and brutal honesty of living with an illness that does not go away. You don’t get a day off, and in my book? You’re more than an Avenger.
So we’ve made it to the end credit scenes
You did all the bloodwork (for the fourth time).
You survived all your doctor appointments.
You fought with insurance for hours over the phone.
You finally remember to take all your medications.
And your pain level? An eight! (That’s unheard of.)
The screen goes black for a moment, silence….
Then:
“The Story Isn’t Over”
Somewhere in the distance, your MyChart notification goes off.
Seriously?
Directed by: Joss Whedone and The Russo Brothers
