A Visible Story of a Student With an Invisible Disease

Summer was finally here. The sun was out and school was done. I had finally finished seventh grade: a year filled with dancing, competing, and performing in my school’s conservatory of the arts. I was fourteen years old, eighty-five pounds, and a skeleton of a human. My illness, previously covered up by an increasingly busy schedule, was brought to light during summer break. My parents knew something was wrong, and the doctor’s visits began. Many appointments finally culminated with a visit to my current gastroenterologist. 

I remained in the frigid, neutral-colored office, unable to understand why my body could not feel complete and healthy, as if I was not in control of my well-being. After an entire summer of journeying from one doctor’s office to another, my yearning for answers only intensified. This doctor was the final stop. I sat numbly as she talked through my levels, feeling as though I were caught on a never-ending carousel, relentlessly spinning without rest— until she uttered the words, “You have Crohn’s disease.” My mom shrieked into tears and collapsed to the ground before me. I sat frozen. That feeling of stillness which molded my body upright on the exam table persisted. This diagnosis would be the beginning of a lifelong odyssey.

Eighth grade began and so did my array of medications. Nevertheless, the year proceeded with dance competitions and performances free of flare-ups. After spending the second semester of Eighth grade on Zoom, freshman year of high school rolled around, and so did my first flare up. It was like night and day; I returned to the slim, pale ghost I once was. In my first AP level course, I struggled to adapt to the demanding workload while being distracted by the mystery of why my medicine was not working. Despite being virtual, my body’s unexpected non-response to treatment drove me to fall behind in school. It took my doctor two months to find a medication that would let me eat, get out of bed, and live somewhat normally again. My grades had dropped to C’s and D’s; my parents were disappointed in me, and all I could do was pray God would find a solution to my unexplained illness. After starting anti-acid medications to address severe acid reflux and painful mouth sores, I resumed school, regaining the will and energy to live. Due to a long three months of my school not accommodating my flare up and completing as much work as I could, I did the only thing that was left to do. Get back up. When you’ve hit rock bottom the only way to go is up. I used making my family and myself proud as motivation to be resilient and give my academic coursework my all. My consistent studying, with help from my friends and parents, allowed me to go from a C to an A average in one semester. The mentality I had drilled into me to simply “push through” had worked but didn’t teach me much academically. 

Even though I got my grades up, the most important thing I learned from that semester is if I didn’t advocate for myself and listen to what my body was telling me, no one else would. Although I had physically healed, I had another battle to fight: the administration of my school. Despite numerous forms of persistent communication, the teachers and admin showed little concern for a student with a newly diagnosed chronic disease. Even after providing information pamphlets to all my teachers, I was denied academic accommodations. As I moved on to sophomore year and I was still being denied the academic support I needed, I had to leave my dance team to balance school and manage my health. The art that had consumed my life for the past fourteen years was done. In school, I was met with hostility by most of my teachers who weaponized the school’s student handbook, one that was not written for a student with any kind of disease/disability. 

Unfortunately, this caused me to struggle with my mental health. My anxiety peaked; panic attacks in the school bathroom became a routine occurrence, one that no student should experience. In class, I’d dig into my face, overwhelmed by anxiety and stress, trying to keep up with everyone else in what I thought was a “competitive” and “rigorous” environment. In reality, it was just toxic and unaccommodating. The constant stress was triggering my symptoms and making me more ill and exhausted by the day. I remember thinking when people weren’t receptive to my diagnosis that I didn’t choose to be diagnosed with this disease. I felt embarrassed and frustrated towards my diagnosis. Towards the end of my sophomore year, I knew it was time to leave. Although I was supported by most of my friends, I felt incredibly isolated. “No one understands what I’m going through,” and “Why doesn’t anyone get that I have a chronic disease?” would run through my head daily. I would walk into school trying to put on a bright face and be optimistic even though I knew I would be met with opposition and conflict by the teachers, and even some of the peers, around me. 

Although this toxic environment made me stronger and incredibly resilient, it came at the cost of my health. The stress from being in this school was triggering physical symptoms like acid reflux, causing me to frequently need to lay down or even miss school. I had developed severe anxiety and depression from the cycle of suffering I was living in by constantly “just pushing through.” I knew two things: Firstly, no student should ever have to go through this level of mental/physical illness, to where their mental and physical health declines in order to go to school and gain an education; Secondly, there had to be another option. This couldn’t be the only environment to be in every day to get a high school education. A dear friend of mine guided me to a private school that I had been tutoring with. Although it was very small in size, for the rest of my high school experience, I knew it had the elements of a school that not only set me up for success but also met my diagnosis with respect and fairness instead of toxicity and conflict. 

After joining the school in the summer of 2022, I was led to where I am today: a proud warrior of this disease. I was extremely fortunate to spend my junior year starting a business club, researching materials for compassion4crohn’s, completing two impactful internships, and, most importantly, healing. Being in a supportive school environment where teachers took the disease I had into consideration gave me the confidence to realize I deserved to heal from what I had gone through. What I had gone through led me to arrive at a place in my life where I was more than okay with my disease; I was even proud of it. 

I was proud of having a chronic disease because I realized that’s what makes me a warrior of a human being. It’s what makes me smart, communicative, resilient, strong, receptive, and compassionate. Every single person with this disease is forced to become those things. Being in therapy and attending my new school allowed me to find the light in my diagnosis. What a blessing it is that I am to be able to be equipped with those traits as an eighteen year old highschooler. Those traits have allowed me to start this organization and constantly work to ensure no other student goes through the isolation and educational toxicity and injustice that I went through. I am a proud warrior of this disease, and every child with an invisible chronic disease like Crohn’s is as well. 

Throughout this journey, the support system of my friends, parents, and God is who I have to thank. They have supported me and shown compassion to me in ways that have kept me alive. I thank all of them and owe most of my success to them. With them by my side, I’ve been able to continue to follow my passion for business and get accepted into a college I thought my disease would hold me back from. If I had to give any student or viewer going through a diagnosis or experience similar to mine any advice, then I would say this: let the pain you’ve experienced fuel the healing of others who may be experiencing something similar to you. Every student or person with a chronic disease is fighting a battle. I’ve found beauty in having a disease, and you deserve to as well. No matter how bad things may seem, someone out there sadly has it worse than you do. I am proud to be a warrior of this disease and hope this testimony symbolizes the light that’s at the end of every tunnel, every lesson, and every trauma. 

A quote from one of my biggest inspirations, Virgil Abloh, states, “Everything I do is for the seventeen year old version of myself.” Although I wasn’t seventeen when I was diagnosed, everything I do and have done is for the fourteen year old version of myself. I know that the fourteen year old me is now eternally proud and grateful to be Joseph Ricotta. Show compassion to people around you with chronic illnesses, and if you are one of those people, you are not alone. Having a chronic invisible disease makes you a warrior of a human who’s equipped with the finest form of resilience. I commend and celebrate your strength, as fighting any battle can only make you stronger. 

Sincerely, the founder of compassion4crohn’s, Joseph Ricotta. 

Note: My DM’s are always open, @Josephricotta on instagram 🙂