Content Warnings:
Medical trauma, chronic pain, CRPS, medical gaslighting/dismissal, injury description (fractures/ligament tears), brief mention of PTSD, grief over dog loss.
💀 Time Travel Back to August 2020
Today didn’t go how it was supposed to. Most days, as of late, really don’t.
It felt like time travel, like I got shoved backwards five years and landed in August of 2020 again- shortly after I fell down the stairs, walked into the same orthopedic office, and walked out with missed fractures that turned into CRPS. I never really left that day behind. And it’s lived in my body every moment since.
Rightfully so. CRPS– Complex Regional Pain Syndrome– is a chronic pain condition where nerves become overactive after an injury, often causing extreme pain, swelling, and limited mobility, sometimes from injuries that seem minor at first. It has no known cure and no universally accepted treatment, though there are interventions doctors try, some of which help patients manage symptoms.
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🩻⚕️🚫 The Crack, the ER, and Feeling Unsafe
Last week, it happened again. I stood up from my chair without realizing my left foot- the CRPS foot, the accident-injured foot- was asleep. I put weight on it, heard an awful crack-pop-crunch, and crumpled like a paper bag. I think I screamed at some point… and M&M came running. But I knew that sound. I knew that pain. I knew- down to my bones- that something was really wrong.
Had Rauru, my black Jeep Cherokee, been sitting in the driveway where he belongs (and not in Fox Lake at the junkyard after someone hit us on October 22nd), we probably would’ve gotten me to the ER that night. Instead, Uber drivers kept canceling because no one wanted to go out past 8 PM. So, we did what we could- tending to my foot with ice and a metric fuckton of Tylenol- and Ubered the next morning, when my foot was more swollen and angry than it had been the night before.
I went to the ER I used to call my “favorite.” Only now, it doesn’t feel safe anymore. To read more on that, go here, I’ll have it linked. They talked over me, waved away my medical history, and spent more time implying my partner might be abusive than actually evaluating my injury. They didn’t even x-ray my foot. (Something I just learned today.) Only the ankle- the part not making the awful grinding pain every time I moved.
Ten days of pain, swelling, bruising, and instability- ten days of overthinking the way I had been told “a bruise can hurt more than a fracture”- and today I found myself back in the same orthopedic office as five years ago.
Because that’s where my “favorite” ER referred me… back into the hands of someone who’d mistreated me before.
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🕷️🖤🦴 Same Doctor, Same Walls, Same Dread
Same doctor. Same walls. Same gut-deep dread.
The first time I met Dr. Patel, he talked over me, called me overdramatic, and insisted that sprained ankles just hurt sometimes and take a little while to heal.
Only I didn’t stay quiet this time.
I told him exactly what happened in 2020. How this office, his office, missed crucial injuries:
- A nondisplaced intra-articular fracture of the medial cuboid bone
- An avulsion fracture along the lateral cuboid
- Partial-thickness tears of the anterior talofibular and calcaneofibular ligaments
All of those “little things” they missed. Their words, not mine. Those “little things” stole the life I had. They cost me full mobility in my left foot, eventually my whole left leg. They cost me sleep, relationships, independence- and they gave me CRPS, one of the most painful conditions on the planet.
So yes- I am so worried something will be missed again.
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🩹⚡🖤 The New Visit and Familiar Dismissal
He looked at the new X-ray (the one still only showing the ankle) and said he didn’t see anything clear. His PA, a wonderful gentleman I’d love to see again, ordered another in-office X-ray, which also didn’t show any fractures. No surprise there- it took an MRI last time to see the fractures and torn ligaments.
And then, in the same tired, dismissive tone I’ve memorized, Dr. Patel said:
“Because you’re so worried about something being missed, we’ll refer you for an MRI.”
Like my concern was the problem- not the history of medical negligence, not the pain, or extreme amounts of bruising and swelling, not the crack I heard, not the unreliable body that has already survived too much.
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🐚🌙🖤 Why This Isn’t Just About My Foot
This isn’t just one bad doctor appointment.
If you’ve been following me for a little while, you already know I have a lot of bad doctor appointments. My body is sometimes unreliable and complicated. That’s just part of chronic illness territory.
It’s about how dangerous it is when doctors don’t believe their patients- especially those of us with chronic illnesses, disabilities, rare disorders, or “complicated medical histories.”
It’s about how people with Ehlers-Danlos Syndrome and CRPS aren’t taken seriously by doctors and medical professionals because our symptoms are “weird,” because our bodies don’t make sense, because “we’re too young,” “too anxious,” or “too dramatic.”
Being dismissed didn’t just hurt my feelings- it changed the course of my entire life. People think disbelief is harmless. It’s not. It’s how I developed CRPS. It’s how a treatable injury became a lifelong condition, stealing relationships, jobs, hours, and trivial happiness from me– for the rest of my life.
I was diagnosed at 25.
I’m 30 now. The average human being lives to 80. You do the math.
If you have a chronic illness or disability, please know your instincts about your own body are valid. Keep records, bring support people, and don’t let anyone dismiss your pain- especially if you’ve already had past injuries or complications.
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🦴🌌✨ Why Being Believed Matters
Being believed can mean:
- Getting the right scan before the damage spreads
- Preventing permanent nerve damage, mobility loss, disability
- Avoiding years of pain, PTSD, and medical trauma
- Actually healing instead of just surviving what could have been prevented
For the chronic illness community, being believed is lifesaving and life changing. Without it, so many people in the disabled and chronic illness communities are misdiagnosed- or worse.
When we are dismissed, it’s not just a bruise to our ego- it’s a threat to our health, our independence, and sometimes even our ability to work, move, or live our daily lives without fear.
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🐾🌻💔 The Glimmers That Kept Me From Falling Apart
Life still sneaks in moments of kindness:
- Charles, our Uber driver, who made me laugh and brought my anxiety from ten to six. Thank you for driving us, talking about drive-in movie theaters, and showing us the colorful lights in your car.
- The nurse, who joked about Mariah Carey thawing out for Christmas while fitting my walking boot. She was just as anti-winter and anti-snow as I am. (M&M is excited, she wants snow to build snowmen.)
- The X-ray tech, who said, “Oh my god, I have EDS too- I get it,” and suddenly I didn’t feel so alone.
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🍄💌🌙 M&M: My Moss Maiden, My Anchor
M&M– the most patient, loving, exhausted angel- keeps me alive. Some days I wouldn’t eat if it weren’t for her. She makes sure I take my meds. Even after both of us were in that awful car accident on October 22nd, even while she’s hurting too, she still cares for me physically, mentally, and gently. I don’t know how she does it- but I am endlessly grateful.
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🌻🐕🦺💔 Luna, Our Service Dingo, and Grief
Luna is struggling too, trying to fill a Bear-shaped hole we still can’t navigate. She presses her head to my chest when my heart rate spikes. She watches M&M like her job depends on it. She’s brave, even when she’s unsure how to be.
She curls up where Bear used to sleep, sometimes whining quietly- but still nudges my hand to check my pulse or alert M&M when I falter.
The Yard Yeti– my younger brother, nearly a foot taller and seven years younger- also helps keep life bearable. Sneaking up on Luna to make her feel normal, heckling us about water and real food, and sharing in family traditions like watching Hazbin Hotel together and eating dinner on the couch on Wednesday nights.
He’s a good kid.
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🦇🖤🕯️ If You’re Still Reading This- Here’s the Most Important Part
Please, listen to patients:
- Doctors: Believe us the first time.
- Loved ones: Support us, even if you don’t understand.
- Patients like me: Your pain is real. Your story matters. You deserve care that doesn’t include humiliation or gaslighting.
If reading this brings up difficult feelings, please consider reaching out to a trusted friend, counselor, or crisis line.
Your mental health matters as much as your physical health.
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🌙🔥🦴 Closing: Exhausted, But Still Fighting
I’m tired. I’m scared this is happening all over again. I’m angry that I even have to write this.
But I’m still here. Foot in a boot, heart in my throat, service dog at my side, partner holding me together with love, Talamasca on AMC+, and stovetop ramen.
I’m exhausted- but I’m not done fighting.
And if this post keeps even one person from being dismissed into lifelong pain, then it’s worth it.
And because I know there’s always one person out there waiting to say, “it could be worse.”-I know, I know there are others out there in the world who might have more going on than I do: the US Government is still shutdown, SNAP cuts are affecting people, and ICE is still everywhere. I, too, am feeling the stress and the strain.
But we’re all trying to survive as best we can.
So please, try and be safe, and kind to yourself.
(and for anyone open, and wanting to donate at this time, there’s a link to a GoFundMe in my Linktree to help us afford a new vehicle.)
-Sky, The Crippled Cryptid
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