There’s a piece of me that no one else knows. It eats away at my skin, my mind, my state of being. There was no research. There was no cure. There was no end in sight. There was no right answer.
But there were others. So many people have dealt with the same trauma from chronic illness that I have. And this is our story.
Chronic illness brings a level of uncertainty and pain to whomever it impacts. That uncertainty skyrockets when you get diagnosed with a rare disease. In my case, that was linear scleroderma, an autoimmune condition that causes inflammation and hardening of the skin. Scars run down the right side of my body, from my fingers to my toes, and remind me of what I went through every day. I was four years old when my leg started itching, and five when I was officially diagnosed. After years of treatment, I wasn’t physically sick. But inside, buried deep under my newly defective skin, is trauma. Just as my scars will be on my body forever, my trauma will be, too.
Medical trauma alters the way your brain processes information. When I try to go back in time, to the days I’d spend in the hospital or crying on my bathroom floor, I can’t. It’s a black hole. I scribbled over the events to act as a Band-Aid. That Band-Aid is the reason that I have no concrete memories from before age eight — my memory activated right when I was diagnosed, and I blacked out. This project was my version of ripping off the Band-Aid through live exposures and finally understanding myself, despite my medical trauma.
My reporting began with my own story. I started with the doctors who diagnosed me at age five, and the ones who saw me later down the line when my body was still recovering from treatment. I moved toward support groups for other people with my disease. I visited the hospital where I was treated more than a decade ago. I finally met people who understood me.
This was how I started to heal.
Chapter One: The Patients vs. Patience
If you told Michael that a broken sternum would turn him into a writer, I don’t think he would believe you. But trauma works in mysterious ways.
Michael was born with pectus excavatum, a chest deformity causing his sternum and ribs to grow abnormally and create a hole in his chest.
When I met Michael, we bonded over how we wrote our college essays about being sick kids. People around us seemed surprised at my nonchalance, but “sick” was such a normal state of being for me. Strangely, it was a relief to know that someone else understood.
Through my friendship with Michael, I gathered that we saw the world in similar ways. Despite being brought up completely different — different religions, genders, ages, states — we both had faced mortality before we even knew how to spell the word.
He told me about the surgeries, about the bedrest, about giving up on a dream to play college baseball. He told me about the kids who would make fun of the “cereal bowl” in his chest. He told me about his scars, a map of his story that only his most trusted inner circle could read.
But it also made me who I am.”
Michael conceals his trauma well as a person described by others as universally uplifting. As a fellow survivor, I know that he holds life to such a precious standard and it makes sense that he’d want everyone around him to feel it too.
I found Karen through a Facebook scleroderma support group. I direct messaged her when I found out her daughter, Julia, was also diagnosed at age five. Our first conversation was almost an hour long, and while I was in my room in Los Angeles, Karen was coincidentally driving to my small NorCal beach town for the day. We both cried, and I said sorry for bringing up this pain again.
I’ve never met Julia in real life, but it doesn’t matter. We have this mutual understanding of one another that transcends a handshake. We’ve been in the same hospital rooms, taken the same pills, been pumped with the same steroids. She probably has better words to describe that awful taste in your mouth from IVs that I’d drown out with Jolly Rancher candies and peppermint candy canes.
Julia has scleroderma, too, but hers is systemic — meaning her body is fighting itself on all levels, not just the skin as in my case. She is younger than me by seven years, but even after all of those years of research our cases were treated remarkably similarly. Neither of us could benefit from a scientific breakthrough. Scleroderma is still treated the same way today as it was in 2009.
It's an isolating disease for children to go through. Systemic scleroderma is more heavily researched in adults, leaving Julia’s mom Karen desperate for answers. The first few years of Julia’s illness were lonely for her entire family. No one understood the pain and uncertainty that they were going through. When I asked Karen about whether she felt any unresolved trauma, she said “Hell yeah I did. We both did.”
“In the beginning she was young, she was five, and we had to do Methotrexate injections,” Karen said. “And she was terrified of it… I remember the second injection ended with me lying in the garage in the fetal position, sobbing because I felt so guilty and so horrible because she was screaming, ‘Why are you doing this to me? Why do you hate me?’... Talk about trauma.”
Chapter Two: The Doctors vs. The Damage
I called Dr. Donna Ruiz in early April crying. I had driven home from the dermatologist and immediately curled up in my bed, drained from another round of cortisone shots in my chest and back. I had a new antibiotic prescription waiting for me at the pharmacy, one of now four I’ve tried over the past six months. I was lethargic, anxious, in pain, and not getting better. My body was fighting against me, and now it felt like all of this medicine was fighting against me, too.
When I was a child, I saw Ruiz at the tail end of my treatment. My body had been wrecked by steroids and my immune system was completely shot. I looked physically sick and felt even sicker. Ruiz was an M.D. but took a more homeopathic route to her treatment practices. I did all the tests, took all the supplements, drank all the oils, and cleared my system of the toxins Western medicine was forced to provide. All of this was in an attempt to find the source of my autoimmune disease — no such luck.
That morning in April I was reminded of how Ruiz had helped me. In my most shell-like state, she had brought life back into me. Through heaves and sniffles, I managed to ask her for help. All she could say back was that I had aged out. She works in pediatrics. She couldn’t help me.
When I took on this project, my scleroderma was in the rearview. I was physically recovered, more than 10 years beyond the turmoil that had swallowed my first memories. And yet, I was still experiencing such highs and lows in my chronic illness. Just this semester, I had days where I didn’t think about the pills I took every night, and other days where those pills trapped me in bed for hours. It wasn’t just the physical symptoms that shut me down, though. I have pulled over on almost every freeway in Los Angeles with sudden tears, shallow breathing, heart racing, palms sweating … the beginnings of a panic attack striking when I least expect it.
That’s how I know this battle is far from over. Because four months into this project I’m still calling my old doctor looking for answers, crying in front of a new resident at the dermatologist’s office, and parked on the side of the road waiting for the panic to wash over me.
— Sarah Stasica
Sarah Stasica used this tactic when her child was going through treatment and simultaneously showing signs of some medical trauma. Stasica got a call from her child’s teacher saying that they scraped their knee on the playground but had a meltdown when the teacher tried to put on a Band-Aid. A hysterical reaction, Stasica noted. This was a turning point in her medical trauma research, to which she has since dedicated an entire podcast.
— Jenny Frankovitch
I have more memories of Dr. Jenny Frankovich than any of my other doctors. I didn’t meet Frankovich until I was five or six years old, and she switched specialties as soon as I finished treatment, but she felt like my doctor, and only mine. I remember going to an appointment when she was very pregnant and taking the stethoscope photo. I remember her telling us we were done with treatment. But now, I remember the moment I got her email response back for this project. She remembered me, too, after all these years.
— David Fiorentino
Trauma lies at a unique intersection of rheumatology and dermatology. When you have an autoimmune disease, it is often a battle that you are fighting quietly. Sickness is hidden under the skin and not out for the world to see. But in dermatology, the opposite is true. The skin tells a lot of the story, both to the doctors trying to help you and to the general public criticizing you. Having an autoimmune disease that affects the skin opens up the patient to a world of opinions and questions, an overwhelming burden for a child.
“[For] a lot of diseases, you treat the activity, it goes away,” Fiorentino said. “There’s no scar, there’s no damage left behind but a lot of these autoimmune diseases do lead to scar. So there’s scar on the outside, on the inside, and that leads to a lot of trauma for the patients.”
I don’t remember everything that people said to me growing up, but I remember how every comment made me feel. That’s the trauma piece of all this — as a kid, it was hard to separate myself and my body from my disease. When I was on Prednisone, a boy in my third-grade class told me I had sausage fingers. In middle school, someone asked me if I had dirt on my leg, referring to my scars from scleroderma. In high school, the comments got more fun for me. A girl on my water polo team asked if I got struck by lightning. I like to think I did.
A book I wrote in 3rd grade about my diagnosis, treatment and recovery from linear scleroderma, also known as morphea.
Chapter Three: The Families vs. Fate
I don’t know whether or not I believe in fate. I do believe that what happens in your life is meant for you, which was a hard pill to swallow as a sick kid. When I finished my second round of treatment, my family tried to change my fate. They wanted to figure out why this happened to me — what had possessed the universe to come after their child in this horrible way? Answers were hard to come by, though, despite additional years of extra treatments and appointments with doctors across my home state of California.
And, after everything, my fate persisted.
The common thread in my reporting was the acceptance of fate. The patients I met told me that even if they could go back and change everything, they wouldn’t touch the fragile workings of time. The fate of childhood chronic illness has changed our lives — for the worse in some moments, for the better in others — but who would we be without this metaphorical weight on our shoulders? Who would we be without this early-onset mortality? Who would we be without this appreciation for life?
There are people who have seen every side of me — when I was a chunky little girl hopped up on Prednisone, when I was older and still on medication that made me so ill I looked malnourished, and every stage in between. Those people are bonded to me not by blood, but by ties that transcend the red liquid in my veins. No matter how many syringes of drugs were pumped through me, and how many vials of my blood were taken from me, these girls stayed. Thank you, Layne and Maya, for going to the pumpkin patch with me even though I had an I.V. in my arm. For treating me like a normal kid when I felt the opposite.
Chronic illness is not the only fate for sick kids. For some, the journey is just getting through every day. For others, it’s dealing with the subsequent PTSD left behind from their illness. But for all of us, there is still meaning to be found in life outside of sterile hospital walls.
There is no before chronic illness for me, and probably no after. My life will consist of the moments where I feel myself pushing through the pain until it doesn't hurt so bad anymore, and moments where I don’t have to feel at all. The hurt won’t only be physical. In those moments when I’m transported back to my trauma, I’ll just have to keep pushing. And keep reminding myself that I’m one of the lucky ones.
Thank you to my family, friends, doctors, classmates, professors, mentors, and my past self for prioritizing my health and happiness for the last 22 years. Without you all, I wouldn't have the strength to produce this piece.