The Invisible Armor of the Chronically Ill

Learning to recognize the power we carry

Living with chronic illness often feels like a never-ending battle, but within this struggle lies an unexpected superpower: invisible armor. In this article, Elle Becker reflects on the resilience, strength, and unbreakable spirit that chronic warriors develop in the face of relentless challenges. Through humor, vulnerability, and profound insight, this piece sheds light on the emotional and mental fortitude required to navigate life with an invisible illness and highlights how these unseen battles shape an extraordinary inner strength.

Written by Elle Becker, Co-Founder of The Chronic Haven (Posted with permission)

Superheroes — everyone wants to be one, right? Come on, deep down, all of us would love some superpower. Everyone has a favorite. I like Wonder Woman. She’s strong and was raised to be an independent, badass woman (read about her creator, William Moulton Marston. He was genuinely fascinating). Most people picture superheroes from the Marvel or DC worlds: capes, tight-fitting costumes, mutant powers, and underwear on the outside.

Becoming chronically ill didn’t make me a “Warrior.” I’m no superhero in the typical sense, but instead, I have super armor, built as invisibly as the diseases that helped give it shape. It was built through years of chronic illness and battling the Evils that come with it.

It doesn’t come with a cute superhero name, perfect six-pack abs, a perky set of boobies, or a catchphrase. Instead, my armor helps me become a chronically ill superhero.

I have over a dozen diagnoses. All are rare, and none are curable. I know a lot of people who are chronically ill, too. I co-founded an online support group called The Chronic Haven. I have met many superheroes there and within the Medium community.

That’s right — we’re superheroes — but we live secretly under the radar. I’ve learned some pretty unique skills.

We may not have origin stories that started with radioactive spider bites. Still, our origin stories began in the hospital’s waiting rooms, in bed sweating and shaking, in frantic online research at three a.m., or waiting for the test result that finally gave us some answers—and perhaps some peace.

Chronic illness superheroes don’t wear capes, though I think it would be cool if we did. Instead, like a gift from the Gods, we can advocate for ourselves, show the hospital our medical flare-up ER protocols, get past triage in the ER, and get a doctor straightaway instead of waiting six hours.

You may think I’m weak and puny because I can’t physically lift more than forty pounds (about 18 kilos, metric people). My strength comes from individual little wins throughout the day because I have accepted my reality and embraced my powers. For example, I could write you a strongly worded letter like the one I wrote to my insurance company that would make you cry big fat tears. When you need to get things done as a chronically ill patient, letters are imperative for documentation. Insurance, doctors, medications, pharmacies, and side effects — I’ve battled them all.

Chronic ass-kickers can withstand levels of pain and suffering that would bring Superman to his knees. My super resilience powers once withstood an entire year of 24/7, non-stop stomach squeezing and cramping, on top of severe nerve pain, spinal pain, vomiting, migraines, nausea, etc. I practically lived in the hospital. I was bed-bound for almost eighteen months. I survived that with my sanity intact — mostly.

Our invisibly armored supers battle armies of dismissive doctors, uncaring and cold nurses, neverending medical bills, gaslighting by doctors (“You’re just fine” — when you’re clearly not), and insurance trickery. We take our trauma and turn it into core strength — though we hide the fact that our suffering leaves us a little bit hollowed out.

Using the general one-to-ten pain scale for reference, my personal scale goes like this: A ten is getting eaten by an alligator while alive. Nine: a car crash breaking your legs. Eight: a flare-up of several of my conditions, all exacerbating each other. I wish I could say I’m exaggerating, but it gets hella bad.

However, one of my superpowers is a pain tolerance that’s OG Bad Ass. I have met and know a ton of you like that out there. Give yourself some credit.

We mask our pain — another power. Nobody wants to be around some whiney Eeyore who can’t stop complaining about something out of their control. We do our best to state where we’re at so you all know our baseline, but it’s a statement, not a complaint. I’m not complaining. The last thing I want is your pity. If I spent every day feeling sorry for myself over the hand I was dealt… then I’d give up. No way.

I use the power of appropriate medication, meditation, biofeedback, and other superpowers to withstand pain that typically sits at about a six on the pain scale. Appendicitis hurt less than my six does. I don’t know what it’s like to not be in pain everywhere, every microsecond, so I have an awareness of time and space like never before.

I notice the first small ray of sunshine in the early dawn as it creeps through a crack in my curtains. I praise its resilience for making it all the way from outer space to land next to me. I feel privileged to share that ray of light. I soak in the little compliments I get, the feedback on my writing, and how I can improve my craft. It excites me. I love being alive — even on the bad days — maybe because I was once close to death.

Chronic pain superheroes try to use their energy for good. When I feel well, I volunteer. I try to be kind and productive however I can, even from couch to couch, while we help each other through the tough days on the interwebs.

We fight the most vicious of villains. Some of my worst villains are the Beast of Brain Fog, The Steamroller of the Spine, and the Crusher, who makes your bones feel like they’re breaking for no reason. Bendy McBenderson — the malicious villain that makes my joints get wanderlust. They frequently leave their sockets. The Vampire is the worst — he takes my energy away. Last but certainly not least is the Dark Lord Sir Fireneedles, the evil King of the Nerve Endings.

Every superpower is slightly different, and though we all wear similar invisible armor — we’re each unique as a fingerprint. If I want to feel heroic, I review the morning, when I wake at three or four am, to an attack on my condition. Every day, I’m ill for an hour or two, and I pray it goes away and doesn't take over my day or week. When I come out the other side of that pain, nausea, shaking, puking, and general physical dysregulation, I feel proud that I made it through, took care of myself, and only woke myself up crying from pain twice last month.

Our kryptonite is Toxic Positivity. Please trust that we have done our homework and research, and even though Auntie Gladys’ hairstylist’s nephew tried some bullshit therapy and it worked, it doesn’t mean that is what we want or need. We also don’t need to hear, “Just think positive,” or “Just exercise/eat right/shove some whacked-out colonic up your butt, and you’ll be fine!”

We are positive — we’re out of bed and trying to participate in life! If someone without chronic illness could switch places with us for five minutes, they would understand, but that superpower has yet to be discovered. Instead, we will fight hard, push through, and ask only for a wee bit of empathy and understanding in return.

Another way we are superheroes is when we endure the side effects of our treatment. Sometimes, the side effects are worse than the disease.

The bottle says the side effects are dizziness and brain fog, so I’ll feel like usual. Okay, bring it on.

Once, I took a medication whose side effect was, “The scalp may feel a crawling or itching sensation.” I endured the awful creepy-crawly feeling for two weeks straight before I couldn’t take it anymore.

Part of our superpowers allows us to research and understand our conditions, how to treat flare-ups, and what to do in emergencies. We become experts in our condition, especially if it is a rare disease.

Doctors love being educated by their patients, too — I say sarcastically. It’s a blow to their ego. They don’t know what to do with the information. If you get a doctor and they are willing to be educated, thank them. It’s a rare occurrence.

When I go to the specialist doctor for the first time, I tell them that I’m an extremely complex case and want to ensure it is a good fit for both of us. In other words, if I don’t like that doctor because they act dismissive, I do my best to educate them. If that still doesn’t work, I ask them for a referral to another doctor. It’s okay to do so, you know. It’s freakin’ hard as hell to say it, but you have that right. Chronic illness superheroes can navigate patient/doctor communication in their sleep.

“It feels like maybe that I need a doctor whose focus is on XYZ disease. If you’re not that fit, I understand. Can you recommend anyone?”

We’re old hats at the “dismissal of our diagnoses by a doctor” song and dance. If you aren’t able to switch doctors because of the dastardly villain disguised as your “insurance company,” then do your best to bring in data supporting your position. Get testing, show them your Fitbit report, and find medical journals — use anything that supports what you know is happening to you and how it can be fixed.

My neurologist had never seen a case like mine. I had to tell him which avenue to research so he’d save time. He finally agreed — it was time for the biggest superhero of all time: Captain IVIG.

I could finally bring the Captain to my team! Captain IVIG (stands for Intravenous Immunoglobulin immunotherapy) is saving my life. I was not doing well, but I fought and used every power I had to convince the Evil Insurance and the hapless Uneducated Doctor to grant me IVIG. It was my last hope. My quality of life was down to nothing because it hurt too much, I was too physically sick, and I had no energy.

I receive the IVIG infusion at my home every three weeks. It takes about nine hours to complete. I can feel the fight in my body as new antibodies come in, and my body says, “Yay, antibodies are good, but foreign antibodies are bad!” and fights my mast cells, which started the whole war. The Masked Mast Cell and I are old enemies, you see. I’ve been challenging him to a duel, but he can’t make it. He’s too busy calming down because my IVIG is freaking making them — like a boss. My nerve endings are demyelinating, and IVIG has a chance of putting my nerve disease into remission or even curing me.

I’d say I have a beautiful, though limited, quality of life. My life may be difficult at times, but it is not bad. There’s a difference. I may not have a full day of energy or have it in spurts and need rest. I still get to do things I enjoy, though sometimes I have limitations — big deal. The point is we are out there rocking and rolling and wearing armor to deflect anything that comes our way. Chronically ill superheroes have one final ability — we can see each other’s invisible armor.

We see you. We recognize how hard you push yourself to get through each day.

Chronically ill superheroes are our friends, sisters, mothers, and brothers. Even though we wear armor, it doesn’t mean we can’t let anyone in.

Perhaps one day, we’ll get the recognition and validity we deserve. Today, being an invisible superhero will have to do.

This article was originally published on 11/20/2024 on Medium.