Chronic Illness from a Teen's Mind

There is an exhausting kind of weight in a storm that never breaks.

You look at the calendar, you look at the floorboards, and you know the script by heart. You know you are supposed to find poetry in the quiet. You know you are supposed to kiss the cracks in your own foundation, to breathe deep, to romanticize the transition, to be the girl who stands defiantly against the dark. You are supposed to be the person your own mind expects, a creature born of sunlight and iron, moving flawlessly through the haze.

But some mornings, the script feel written in a language you forgot how to read. And beneath the exhaustion, a low, poisonous heat begins to simmer.

You put on foot in front of the other because the clock demands it, because gravity insists, but your spirit stays heavy, anchored to the mattress. You are trapped in a strange, dizzying contradiction: feeling absolutely nothing at all, while simultaneously feeling every single thing all at once, so loud it burns. A crowded, screaming room inside a frozen house. You are a paradox of static and chaos, and there is an unspeakable, irrational rage clawing at the back of your throat. It’s a seething anger directed at nothing, and yet entirely at everything. You are furious at the sun for rising, furious at the walls for staying upright, furious at the very air for forcing you to breathe it. It is a quiet, blinding violence that has nowhere to go.

There is a longing in the chest that defies a title.

It’s a phantom ache, a heavy, nameless pull that sits right beneath the collarbone. It feels like homesickness, but for a place you have never been. It feels like mourning, but for a version of yourself you haven’t even met yet. Your mind spins endlessly in the dark, weaving invisible threads into heavy iron chains, building monsters out of the quietest corners of your own bedroom.

It tells you the air is thick. It tells you the walls are pressing in, collapsing toward the center, even when the room is wide open and empty.

And the cruelest trick of all is the silence of it. No one else sees the battle lines drawn across the carpet. No one else hears the noise of a mind turning against itself, white-hot and resentful. You look in the mirror and see a broken doll - not shattered by a sudden blow, a tragic accident, or a hand outside your own, but carefully, quietly dismantled by your own thoughts. You are the architect of your own ruins, and you hate yourself for it. You want to scream at the reflection, to smash the porcelain, to tear down the very walls you built, because how dare you be the one break yourself? How dare you be your own worst enemy?

How do you mend a fracture you cannot point to? How do you fix a machine when you don’t even know the name of the piece that went missing? How do you heal when the thing that hurts is an invisible phantom - and how do you survive the sheer, bitter fury of being trapped inside it?

The thoughts race in a blur of silver and gray, too fast for the pen to catch, too heavy for the throat to carry.

You want a word for it. A clean, sharp name to pin down the feeling of being utterly stuck, frozen in place, while feeling entirely unready to take the next step forward. You are paralyzed on the threshold, caught between the familiar comfort of the ache and the terrifying uncertainty of the healing. The world outside the window demands motion, demands growth, demands that you choose a direction. It asks you to keep up, and the sheer audacity of that demand makes your blood run hot. But your body refuses. Your heart hesitates.

You wish you could just explain it. You wish you could hand someone a page that makes sense of the static. But the words collapse before they hit the paper, leaving only the bitter aftertaste of a silent scream.

But maybe - just maybe - not having the words is the truest translation of being human.

Perhaps the mistake is thinking that everything broken needs an immediate cure, that every empty space needs to be filled, that every silence needs an explanation. Maybe right now, the masterpiece isn’t the fixing. Maybe the masterpiece is simply surviving the noise, surviving the heat, surviving the rage that burns without a flame.

Even if you are half-formed today. Even if the dress is only worn for an hour, or the lipstick is washed away before you ever leave your room. Even if the demons are loud and the words are completely missing. You are allowed to be an unfinished draft. You are allowed to sit in the ruins of a self-made storm, white-hot and trembling, waiting for the air to clear, without needing to apologize for the mess.

Every day isn't promised, and if I could do just one thing on this earth, it would be to empower others and spread awareness on underfunded and undiagnosed chronic illnesses/pains. If you have a moment of time, I would love it if you could check out my Substack!

It’s part memoir, part art project — a soft rebellion against perfection.

A space for the “almosts”: the half-finished days, the flickers of hope, and the beauty that blooms in the in-between.

I’ll be sharing my writing, my art, and my story — the reality of living with chronic illness, but also the light that still finds its way through. This project has become my safe place, my way of turning pain into purpose.

If you’ve ever felt suspended between who you are and who you want to be, I think you’ll find something familiar there.

Please take a moment to subscribe — it’s free, and it would mean the absolute world to me.

Your support, your eyes on my words, your belief in this — it truly keeps me going.

With love and gratitude,

Kenzie 🤍

Late last year I was completely and utterly lost. I’ve always heard stories about people losing themselves, but I never thought I’d ever relate to them. The entire concept of losing yourself seemed foreign, I mean I was so certain in who I was, and what I believed in. I mean that has to mean I’m immune to losing myself, right?

Nope. And how I found myself there wasn’t just a random event, where I one day woke up and didn’t understand who I was anymore. No, it was a chain of events that perfectly aligned that allowed it to happen. A negligent society and a pain riddled body are the perfect recipe to create the downfall of anybody’s psyche.

Five years of negligent doctors, misdiagnosis, disappointments, gaslighting, sleepless nights, endless pains, lost experiences, and progressing symptoms all weighed incredibly heavy on me. The combination of those things led me to enter a space I have never been before, and one I wholeheartedly hope you never find yourself in. A space where shadows and nightmares lurked around every corner. Where the foundation cracked and the ceiling caved in. Where the air felt tight, and the walls narrowed in. Where the strings of others actions puppeteered me, and the voices of others seeped out of my lips.

I found myself at the mercy of this space, and losing myself at a rapid rate. Not only did the activities that bring me joy slip away, but my soul started to as well. I found myself stuck in a psychological warfare situation, torturing my mind, body, and soul with the cycle that seemed to never end.

A cycle of symptoms appearing, no answers, countless dismissals, constant unknowns, no resources, complete denial, and traumatic appointments. A cycle I continuously found myself in. A cycle I thought I had escaped at fifteen, after fighting with everything I had and more to regain the ability to walk and function again. A cycle I thought I had broken at sixteen when I finally got an answer and prescribed medication for. A cycle I found myself in again at seventeen, only this time it seemed to never have an end in sight.

It’s impossible to not question yourself, when so many tests and doctors all conclude there’s nothing wrong with you. And in this space this feeling of rejection and disregard had me questioning my own sanity. I started to blame myself for everything bad that had happened to me. I came to fester such hatred towards myself and my body that I couldn’t even look in the mirror anymore. The reflection of the shell of who I used to be is painful to witness. I mean after all, my body had become the source of all my pain and issues in my life, it almost seems logical that I’d eventually grow a hatred towards it eventually.

It didn’t help that plastered on the forefront of my mind were the pictures of other kids my age simply just living their life. Constantly comparing myself to their successes, and blaming myself for not being able to achieve the things they were able to do.

It seemed like I could never escape the what ifs, and the whys. No matter how hard I struggled against the shackles these questions contained me in, they would always win in the end. Dragging me down further and cementing my spot in this new and treacherous space.

I was in a purgatory-like state. Waiting for the right diagnosis, waiting for the right person to help me, waiting for options, and waiting for resources. I had been fighting so hard for five years to get the help I so desperately needed, and it wasn’t being reciprocated on the medical systems side. So, I gave up all and any hope I ever had. I had gone through so much heartbreak at the hands of medical professionals my mind shut off completely to spare me the pain of it all.

The days during this period I can’t really recall. I was operating on autopilot, I was just trying my best to stay alive. I stopped writing, I stopped drawing, I stopped learning, I stopped doing the things I loved the most in the world. I had allowed the pain and symptoms to completely take over who I was and who I am as a person.

Fast forward to a day in early November, and for the first time in a year a sliver of light managed to break through that dark and dehumanizing place. A diagnosis. A resource. Options and directions. A doctor who understood and validated me and everything I had been through. I walked in those office doors hating the idea about even being there, and I left with a feeling I hadn’t felt in months, hope.

I broke down on the curb outside and cried. Five years worth of tears came sprawling out, five months of pain, sorrow, and grief that all could’ve been prevented had someone had known what was wrong with me. I cried as the weight of am I crazy was lifted off of me, and for the first time in a long time I felt like I could breathe.

Something I wish people in our society understood is when you’re navigating a medical system that is set up to fail people who have multi-systemic disorders or illnesses, is that the diagnostic process and the uncertainties are a million times worse than the physical symptoms I have to deal with daily.

After that day in November I realized I wanted to pull myself free from those dark and decrepit walls that space confined me to. I wanted to heal myself, my mind, body, and soul. And that meant I would have to put so much work into escaping and not letting that space become my permanent residence. I couldn’t and wouldn’t let myself be defined by my diagnosis and symptoms anymore.

I turned eighteen yesterday. And I can confidently and proudly say I am not in that space anymore. Through therapy and doing my best to heal myself, I am in a much better place.

I realized that the way I would talk to myself and belittle myself, I would never do to someone else. So why was it okay to talk to myself like that? I realized that I was stuck in a mindset of self-pity and feeling less than just because of my disability. But I would never think that of others who also have disabilities, so why was that okay to think of myself like that? I realized that this is the only body I will ever get, and to fester so much hatred towards it seems unfair. Everyday in this life is so precious and not guaranteed, and living a life of hate, whether it's towards yourself or others, isn’t a fulfilling way to live. There’s already so many heinous and horrific hate filled acts in this world, why should you add onto it, when you can choose to spread love and warmth? Why add to the problem when you can easily help provide a solution.

I used to be laser focused on the future, always planning perfectly to a t how I wanted my life to play out. And when the fantasy I had created for a future me became my reality and it didn’t match, I didn’t know how to handle it. I was always in a state of fearing hypotheticals and situations that would pop into my mind. And when that didn’t work out well, my mind found itself reminiscing on past traumatic events. I was stuck in a place between the future and past, and not focusing on living in the present.

I realized that it’s not worth worrying about the future, because the what ifs and the hypotheticals you create in your head might not even become your reality. And if they do, then you’ll figure it out in that moment. I realized that you can’t change the past no matter how much you want to. And I realized that there is nothing you can control other than what you do now, in this moment. And that’s all that matters.

I realized that to fully love and know myself I had to learn to love and accept the diagnosis and illness that caused these chain of events in the first place. It’s not going anywhere, it’s my scary ominous companion that's glued to my side. I might as well put a pink bow on it and try to learn to love it. And for a long time the thought of loving and accepting the thing that caused you so much pain seemed impossible. But I can confidently say that I do love it, in my own weird way.

I also realized that there’s no point festering hate and blame towards my body, because I was simply born with faulty wiring. It’s not my body’s fault, and it’s not my fault. My body is simply trying its best to hold me together, and for how hard my body works to do that I am so proud of it for. I can’t change the cards I’ve been dealt, I can only change how I play the game.

I turned eighteen yesterday. And I am in the healthiest space mentally and soulfully I’ve ever been in. Maybe not physically, but we're doing the best we can haha.. I am a whole person outside of my illness, but I’ve also learned that denying that my illness is a part of me only ends up with negative results. It is a part of me, but it’s not me.

I am an old soul. I love to get lost in a good book. I love to articulate an idea I had in my head into words. I love to create art out of a blank paper with my own hands. I love to learn about our world and the history behind it. I love to get sucked into a catchy chorus and dance around in my room. I love all things pretty feminine and delicate. I love that I find the beauty in all broken things. I love dressing up and doing my makeup. I love to advocate and provide a safe space for people. I love, love. I love to have such a deep sense of empathy and compassion towards everyone. I love that I am a positive light in this dark world. I love that I have the ability to step back and see a situation from all different perspectives. And I love that I love myself.

Getting myself out of the deep end, to where I am now was not easy. But I am so proud of who and where I am today. Everything happens for a reason, and even though these health issues are annoying and cause me so much pain, maybe I have them for a bigger reason. In the grand scheme of things maybe I’m supposed to have these diagnoses for some reason.

I think and firmly believe that one of the greatest blessings in this life is the ability to help another human. In any shape or form. And I’ve always felt like I was put on this earth to help other people. I mean when I was twelve I organized an entire presentation for my entire grade on mental health disorders and how to recognize some of the signs. And maybe by me having hypermobility ehlers danlos syndrome, post orthostatic tachycardia syndrome, mast cell, amplified musculoskeletal pain syndrome, chronic regional pain syndrome, function neurological disorder, dysautonomia, generalized anxiety disorder, depression, and ocd, maybe I can use these things I used to consider burdens, to create something positive and helpful.

If I’m able to help just one person in this world, in any shape or form then I would be content and proud of the life I led. And while people might think it’s noble that I want to do this, I just want to make it clear that I’m not doing this in spite of my disability. No, I’m not noble for thinking like this, i”m just simply being me. And no, I’m not doing anything in spite of my diagnosis, I’m doing anything with my diagnosis. I’m working hand and hand with them, and in return I’m more accepting towards them, and they’re more gentle towards me.

I turned eighteen yesterday, and I am so happy. My main goals right now are to just work on healing myself even more, learning and listening to my body, and loving all the wonky weird bits that make me, me. I’m finally living in the present, I don’t worry about the future and wish I could change things about the past. Instead, I worry about what I could do now, in this minute to make me feel better. Whether that's picking up a pencil to draw, typing on a keyboard, watching funny TikTok videos, listening to my favorite albums, reading my comfort books, talking to my family, or even just simply taking a nap.

*picture not mine*

There’s a moment in time, right before the flames and pain make their presence known; a singular second that I wish I could bottle up forever. Ironically, you don’t realize how precious and serene that second is until it’s already past; I guess time works weirdly like that. I wish I could savor that moment when my lashes sweep the tops of my cheeks in that last eye blink. I wish I could swim in that crystal clear exhale that escapes me; I wish I could live in that final moment before pain and distress consume me. I wish that singular second, where everything is calm, cool, and collected, would last an eternity. I wish my days weren't dictated by the flames taking control of all my senses, hindering my ability to be free as the smoke fills my head and the flames absorb my body. And as the embers flicker into the minutes, the hours, the days, and the months, I find myself longing for the simplicity and serenity that singular second granted me. I would give anything to forever live in that moment. 

There was a girl I used to know a long time ago. A girl who marched to the beat of her own drum, whose chunky blonde highlights reflected in the sun, whose smile was made of wire and rubber bands, whose artistic capabilities were starting to expand. A girl who was starting to find her way, who was a painfully shy people-pleaser, and who was so excited for her future. A girl that was so blissfully unaware of everything that was about to come her way.

I wish there was a distinct series of actions leading up to when I first felt this pain, but there’s not. There isn’t a traumatic injury, no broken bones, no falls, no bruises, and no reason why this started. The days before were beautifully mundane spent doing the same monotonous daily routines and tasks. There was nothing extraordinary or memorable, and that infuriates me.

Rationally I understand that I shouldn’t be stuck on this hill, what happened has already happened, so why should I spend more time focusing on what didn’t happen? But irrationally, my heart can’t take the fact that there isn’t a particular reason to fault, and my soul turns black and blue when I realize that there isn’t an outside source to blame; the only one being my body itself.

When I wonder if there is a way to prevent what I went through from happening to anyone else, I don’t like the fact that I can’t answer.

The truth is I don’t know why this happened to me, I don’t know why I went to bed one night completely fine and then woke up the next morning in excruciating pain.

All I can recall is the sound of rain bouncing off my windowsill as my sleep-clouded mind tried to make sense of slipping from the comforting lullaby of unconsciousness. There was a slight chill in the air making me sink deeper into my mattress, and snuggling in the warmth my comforter provided. As my right leg came in contact with the same comforter, a pain jolted me awake.

Slightly disoriented still, I tried to rub the sleep out of my eyes as I threw the comforter off my body; the chill in the early spring hours biting into my skin in the process. Warmth akin to a fire felt as if it sat deep in my right thigh, a deep crushing ache in the center of it all. Confused, I tried to move and inspect the area only to find nothing to explain this smoldering leg pain.

Carefully, I stood up ever so slowly and began making my way downstairs. With every passing step and every inch closer to my target, I tried to recall if I had done anything the last couple of days to warrant this kind of pain. I came up empty.

Confused and frightened was the sight my mom was met with as I finally found her sitting in the living room with my baby sister. They say a mother's intuition is always right, and my mom could read me like a book; she knew something wasn’t right as I made my way toward the couch.

Trying to describe a pain I had never felt before was almost impossible, I had no words to describe the flaming pain I was experiencing. I tried to convey that my leg felt hot and ached like it never had before, my mom was concerned and told me to eat some breakfast and take some Advil or Tylenol to see if it offered me some relief.

I did just that. And an hour and a half later the pain was gone. A phantom, a ghost, a whisper forgotten. It was like the pain had never existed in the first place. Maybe I had just pulled something, or maybe I did something in my sleep, but whatever it was, it was gone now. I was free from the flames that flickered in my leg, and I was okay.

A baby born in February whose cries warmed the frigid air of all those around her, a mother's warm embrace, a father’s catchy laughter, an older brother’s playful spirit, all of these things are what welcomed me into the world. 

I don’t think anyone’s family is perfect, but mine is close. 

New years spent covered in glitter and beads, waking up on Valentine's Day to treats and charms, competitive easter egg hunting, summers in the Outerbanks, fireworks and family, back-to-school shopping sprees, costumes and hayrides, stuffing and laughter, and Christmas mornings all felt ever so magical. These are the memories that defined my childhood. It was a picturesque painting my parents so carefully crafted for my siblings and me. There aren’t enough words to describe how grateful and lucky I was to be born into such an amazing family. A family that no matter what my unhinged imagination conjured up, always supported me. 

I was a curious child, bouncing back and forth fixations like a racket ball. From basketball, to gymnastics, to swimming, to horseback riding, to girl scouts, to cheerleading, to school clubs; if I was curious about something I would go for it, and I had my entire family behind me in every decision. 

Some may say precocious, others may say, overachiever, I’ll just go with clever, but from a young age, it was evident that I wanted to be the best at anything I did. Walking at nine months old, reading and writing by three, getting top grades in kindergarten, and being way too hard on myself from second grade. There wasn’t a harsher critic of my work than myself. I’m not sure why I was born such a perfectionist, my parents are genuinely happy with any thing I do, but I’ve always been this way.

Looking back I’ve always been a sickly child, although back then it didn’t seem like much, but now it’s ever so clear something was going on. Like whenever I would get a cold, I would always be sicker than all of my friends, also it would last longer and take me more time to get rid of it. Often a simple virus would lead to secondary infections which prolonged the recovery time even further. 

A frightful and slightly traumatizing incident occurred after an ordinary routine dental cleaning. The specifics aren’t clear, but the doctors assumed that bacteria got into my bloodstream and landed in my femur bone, slowly eating away at it. The technical term is osteomyelitis, and spent a week in the hospital fighting the infection. The doctors informed my parents that if we had waited a further 24 hours, I would’ve had to have my leg amputated. I was in the fourth grade, 9, and petrified. 

I can’t help but draw parallels in my mind as memories from that time flash in front of my eyes, a girl so innocent and so full of love, screaming at the top of her lungs clutching her leg in pure agony as she pleads to her parent’s for some relief. Little did that innocent girl, who was so full of love know that in just four years she would be in the same position; only this time with no explanation as to why she was in such agonizing pain. 

When I was 13 the entire world was in disarray. It was 2020, the pandemic had just reached the states, and everyone was paranoid and terrified of the havoc this virus left in its wake. Depictions of toilet paper battles, milk shortages, mask mandates, and uncertain news reports come to mind. Portrayals of political anxiety and never-ending riots were prevalent, and misinformation and inconsistent media plagued our screens.

Being 13 years old and watching the world you once knew fall apart so quickly on the scale that it did was something to this day I don’t think I’ve fully processed. I don’t know if I ever fully will. 

Days seemed to stand still, the future didn’t seem bright, and quite frankly there didn’t seem to be any light in the outside world. With the melancholy state of the outside world, my family did their best to create a fun atmosphere inside our home. It’s been instilled in me from a young age that laughter is the best medicine, and in a time so dark and dim as 2020, all you could do was try your best to find humor in the smaller moments. So that’s what we did. 

behind every “i’m fine”,

is a girl whose body is fighting itself. is a girl who still does not understand how she has to live with this pain forever. is a girl who will never understand how this happened. a girl who will never stop talking about the negligence in the medical system.