⚠️ Content Warning: This post discusses grief, chronic illness, medical trauma, mental health, and job loss. It briefly touches on emotional struggles many disabled, and chronically ill people face, including depression. Please take care while reading and know you’re not alone.
There’s a grief no one prepares you for: the grief of losing who you used to be.
Before I got serious about my health in 2020- shortly after my mom passed away- I knew I had chronic migraines. I’d been diagnosed at ten years old, the same year I had my first terrifying brush with something much bigger: anaphylaxis. That day after gym class, I broke out into hives, couldn’t breathe, and collapsed in the school office. My mom, in her endless love and almost superhuman instinct, somehow beat the ambulance to the school. She made it in four minutes flat. Even my childhood best friend, Autumn, remembers it. (We lived almost 15-minutes away from that school- sometimes, I swear that woman was supernatural.)
At the hospital, no one could explain what had happened. I had no known allergies. I hadn’t eaten anything new. I hadn’t been stung. But I couldn’t breathe. My body was swollen, my throat raw, my lungs struggling. They pumped me full of meds, ran all the tests, and still- no answers.
We spent months bouncing between allergists. One in particular, told me I had faked the whole thing- and to that my mother, ballsy as she was, asked him to his face if he thought that I, a 10-year-old child had the wherewithal to orchestrate faking anaphylactic shock in front of trained EMTS just to get out of class. Or if he thought that I had just been carrying around a red crayon, drawing hives on my skin for months, fooling every trained medical professional around me. Another threw every antihistamine and steroid they could at me with no relief. I was a Benadryl zombie, too drugged to think straight or function. If I looked at the gym wrong, I’d break into hives.
It wasn’t until we found Dr. Chiu at Children’s Hospital of Milwaukee that I was finally seen. She had the same condition. She proved it to me by running a fingernail up her arm and showing me her own welts. That day, I finally got a name: Chronic Idiopathic Angioedema—what we now understand was Mast Cell Activation Syndrome (MCAS), a common comorbidity of Ehlers-Danlos Syndrome (EDS). She got me into the Xolair trial. I’ve been on it for 20 years now, and it saved my life. It gave back more of my freedom than I have words for.
Before Xolair, at one point, I could not go from one room to another if it meant that the temperature fluctuated too much. I couldn’t take a shower due to the temperature, or the water touching my skin. I couldn’t go out into the sunlight. One day, a safe food of mine, was no longer safe- and the next it was, all because my mast cells were in such a way, that they could not calm down.
But my journey didn’t stop there. In 2020, after my mom died, I took my health into my own hands. That’s when the diagnoses really began to unfold- POTS, fibromyalgia, polycystic kidney disease, hypermobile Ehlers-Danlos Syndrome (hEDS), and more. Conditions that explained everything I’d been told was “just anxiety,” or “you’re overweight,” or “you’re too young to feel this way.” Conditions that explained the pain, fatigue, dizziness, and constant struggle I’d lived with silently. Answers that I’d wished I’d had ten years before, fifteen years before, you name it.
Before chronic illness fully took over my life, I was a different person. I played baseball and soccer. I loved swimming, riding bikes, and exploring with my Sheltie, Rex before he passed away in 2013. I was outdoors constantly as a kid- playing in the garden with my grandmother, drawing on the porch, dreaming under the stars.
But chronic illness stole that version of me.
It took more than just my health- it took my career. In 2022, after an epic road trip from Illinois to Canada to Utah to see our favorite band, Citizen Soldier, I came home to the shock that I no longer had a job. That job had become my lifeline- and it ended without warning, leaving me gutted and grieving. The workplace had been wildly toxic, yes, but losing it felt like losing part of myself.
Since then, I’ve lost so much more:
- The ability to sit for long periods without pain.
- The ability to stand or walk for too long, unassisted, and without pain.
- The ease of reading without triggering, migraines, headaches, or straining my eyes.
- The joy of drawing, writing, creating without pain.
- My independence, my stamina, and sometimes even my hope.
I’ve lost relationships, missed out on experiences, normal age appropriate milestones, and watched friends live their own milestones I only dreamed of- graduations, engagements, adventures, weddings, babies- while I picked out my first cane, a rollator walker at 26 and even a wheelchair all by age 30.
And yet…
- There’s still beauty.
- There’s still meaning.
- Because I’m still here.
- I’m still fighting.
- I’m still writing- however slowly.
Even Luna, my brilliant service dog in training, is a symbol of what I’ve lost and what I’ve gained. She’s here because of my disabilities, yes- but she’s also a light in the dark. A partner. A guardian. A companion.
There is no “going back” to who I was before. The medical trauma, physical scars, and every needle poke in between have changed me on a molecular level, and that girl on top of Oma and Opa’s boathouse, dreaming of someday going off to Harvard, becoming an author, and writing novels by hand? She’s still with me. She’s just had to learn to write differently. To live differently. To grieve and grow at the same time.
There is no Crippled Cryptid without the “crippled” part. And while I might mourn who I was, I’m learning- day by day- to embrace who I am now.
🧠💛 Mental Health Crisis Resources
If you’re struggling with your mental health, please know you are not alone. Many people living with chronic illness also experience depression, anxiety, and trauma. Help is available—please reach out if you need support.
📞 988 Suicide & Crisis Lifeline – Dial 988 or visit 988lifeline.org
Available 24/7 for free and confidential support.
📞 988 Suicide Crisis Helpline – Dial 988 or visit 988.ca
Available 24/7 in English and French.
📞 Samaritans – Call 116 123 or visit samaritans.org
Available 24/7 for anyone in emotional distress.
You matter. Your story matters. And there is help.
When Babe and I crossed back into Illinois in 2022 after our roadtrip, we were listening to the CD we bought at the Citizen Solider concert, and the first song we heard was “This is Your Sign.”
So in the words of Jake Segura- “If you’e waitin’ on a reason why, this is your sign.”
-Sky, The Crippled Cryptid
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