My journey of illness and resilience is something incredibly close to my heart, and sharing this deeply personal part of my life is something I truly cherish. It is a story shaped by hardship, carried through storms, and sustained by hope and faith. My experience with chronic illness began nearly three years ago after suffering two ankle sprains. Once my doctor cleared me to run again, I developed severe peroneal tendonitis in my ankle. What I didn’t realize then was that sitting out of gym class, resting my foot constantly, and missing activities I loved would mark the beginning of a long journey where my health would slowly begin to affect every part of my daily life.
We tried everything—physical therapy, aqua therapy, and shoe inserts—but eventually, my ankle was immobilized with a boot and crutches. Despite being non-weight-bearing, the pain never subsided. When the boot was removed, my symptoms worsened dramatically. I developed extreme sensitivity to touch (allodynia), my foot began turning purple, and I experienced abnormal sweating. I waited until the very last moment to put my shoes on before school, and showers became unbearable. Even the slightest touch sent waves of pain through my body.
Within a week, the pain spread to my other limbs, accompanied by severe nausea and dizziness. I was diagnosed with Complex Regional Pain Syndrome (CRPS), a rare neurological condition in which the brain misfires and sends constant pain signals, forcing the nervous system into a continual fight-or-flight state. It is considered one of the most painful conditions, ranking extremely high on the McGill Pain Scale, and there is no cure.
Receiving that diagnosis was terrifying. I felt isolated and misunderstood, especially as my ability to participate in normal teenage life slipped away. I lost friends who didn’t check in when I was hospitalized and treated me as though I no longer existed. I felt hopeless and invisible, sitting restlessly in class with one shoe on and one shoe off, unable to explain my pain. The friends who remained were my church friends. They sent notes, prayed for me, and encouraged me constantly. Around them, I felt seen and accepted. I truly believe our shared faith became the anchor that strengthened our bonds, and I remain deeply grateful for them.
Living in constant pain took a toll on my mental health. Being bedbound felt heavy and unfamiliar, and each day I drifted further from the life I once knew. About a month later, I began a three-week intensive pain recovery program. There, I met other kids my age facing similar diagnoses and participated in therapies like physical and recreational therapy. Walking into the clinic and seeing others who understood my experience was powerful. When another girl shared that she also had CRPS, I realized I wasn’t alone. The friendships formed through shared pain became incredibly strong, and I still keep in touch with some of them today—a reminder that suffering can forge meaningful connections.
After completing the program, I regained some independence and returned to daily activities. That summer, I traveled to Kansas for a youth group conference with my church friends, swimming and staying active again. However, pain and symptoms persisted. I began developing food intolerances, experiencing stomach pain and throat-tightening sensations after eating. Allergic reactions became frequent, triggered by heat, fragrances, and foods, causing flushing and rashes. Despite eliminating gluten and dairy, the pain remained. Carrying an EpiPen everywhere and constantly requesting accommodations made my illness impossible to hide. We later suspected Mast Cell Activation Syndrome, though the cause of my severe stomach pain remained unknown.
Navigating my new normal was exhausting. I found deep comfort in friendships with others who were chronically ill—they understood without explanation. I feared losing friends because I was “too sick,” but over time, I learned to treasure those who loved me as I was. Losing friendships was painful, but it taught me that I deserved care, compassion, and genuine connection.
After my junior year, I knew I needed change. I felt invisible at school and struggled to receive necessary accommodations. I was even publicly accused of cheating by a teacher who forgot about them. Choosing to switch schools for my senior year—to take college classes and intern at a law firm—was a leap of faith, but it became one of the best decisions I ever made. I reconnected with old friends, made lasting memories, and grew in confidence and faith.
Around this time, I connected with others in the chronic illness community through social media. These friendships brought understanding, laughter, and purpose. I even served on the Junior Board of Directors for a CRPS organization, helping spread awareness and support others navigating new diagnoses.
A year later, my CRPS worsened significantly. My baseline pain reached 7/10, and I deferred college to travel to Spero Clinic in Arkansas for treatment. Although difficult to watch peers begin college life, my pain improved dramatically—from a 7 to a 3—and I made meaningful memories with friends from the clinic.
Sadly, my health declined again. I became unable to tolerate food, leading to severe malnutrition. I returned home to New York, losing over 20 pounds and struggling through daily pain. Doctors were unsure how to help, and one even told me to “just eat.” Eventually, I received a feeding tube. Learning to embrace it has been a journey, but it allows me to live, connect, and regain strength. It is a symbol of resilience.
After weeks of testing, we discovered the cause: Median Arcuate Ligament Syndrome (MALS). This condition causes intense pain with eating, breathing, and movement. The treatment is major surgery to release the compressed artery, which I am scheduled to undergo in April 2021. I am hopeful for healing, recovery, and enjoying food again.
Looking back, these three years feel both endless and fleeting. Looking ahead, I see “Life 2.0” after surgery and feel excited for college and the future. I have learned the value of genuine friendships, self-advocacy, and faith. Though my journey has been difficult, it has shaped me into someone stronger—someone who believes in herself, embraces hope, and knows that even in the darkest seasons, a better tomorrow is always possible.
