Sarah’s story begins not in a doctor’s office, but in the Philippines, where she was living on a mission trip in 2018. Her diet there was simple: rice and chicken, what the locals ate. Clean water wasn’t always available, and she began to notice rice getting stuck in her throat, with nothing to wash it down. Severe reflux set in, worst at night. Antacids weren’t accessible, so she improvised with powdered milk and kept going.

When she returned to the United States, her body seemed to carry something back with it. Dairy products began triggering stomach pain and that familiar sensation of something lodged in her throat. She learned to keep a drink within reach at every meal. For years, she adapted and managed quietly, hoping things would resolve on their own.

They didn’t.

In May 2024, Sarah finally went to her primary care doctor. She was told that swallowing difficulties are rare, a response that felt more like dismissal than reassurance, and was sent home without further investigation. She came back in August, more insistent this time. A barium swallow test was ordered. The results showed small bits of food caught in her throat, but the official conclusion was that nothing was wrong. She was advised to chew more carefully and use sauces to help food go down.

Sarah kept pushing. In September, she contacted her doctor again, this time having identified dairy as a clear trigger. She asked for allergy testing. Her doctor discouraged it. Eventually, a referral was made.

The allergist, seen in October 2024, took one look at her history and immediately suspected EoE. She was referred to a GI. In November 2024, six years after her symptoms first appeared on a mission trip halfway around the world, Sarah was diagnosed with eosinophilic esophagitis.

A proton pump inhibitor was prescribed. It was not the right treatment for her, so her GI recommended an elimination diet. She eliminated dairy for three months. Her next endoscopy showed some improvement, but not significant progress. Furrowing had developed in her esophagus. In May 2025, her GI added wheat to the list of foods to eliminate.

Then, in July, her family relocated to Missouri. She received a referral to a new GI before leaving, but has been unable to get an appointment. She is waiting, in a new place, without established care, trying to manage a condition that requires consistent monitoring and support.

What makes Sarah’s situation particularly hard is something that doesn’t show up in any scope or biopsy. Her family doesn’t take her condition seriously. She is walking this road largely alone, without the dismissiveness of early providers behind her, but also without the steady presence of people at home who understand what she is carrying. For someone managing a chronic illness that requires daily dietary vigilance and ongoing medical coordination, that isolation is its own kind of weight.

Sarah is still waiting for her appointment. She is still eliminating foods, still reading her body carefully, still advocating for herself in rooms where she has often had to fight just to be heard.