What a measurement cannot tell us.ما الذي لا يخبرنا به القياس؟

Anatomy, uncertainty, and an unfamiliar word.

In 2011, I was studying anatomy at school. I liked the ordinary wonder of it: how a living body could be assembled from structures small enough to require a microscope, yet coordinated enough to breathe, move, heal, and sometimes fail. I was interested in science before I could imagine a profession in it.

Around those adolescent years, recurrent gastrointestinal illness became part of my life. There were periods of severe abdominal symptoms and persistent vomiting, followed by tests, consultations, and attempts to understand what was happening. Investigations documented eosinophilic involvement of the gastrointestinal tract and substantial eosinophilia in the blood. Over time, clinicians used descriptions including eosinophilic gastroenteritis and hypereosinophilic syndrome.

I do not present those historical labels as a definitive contemporary diagnosis. Later biopsies did not always reproduce earlier findings, and a hematological investigation did not support a clonal or myeloproliferative cause. The clinical story remained more complicated than any one label could hold.

I graduated at sixteen. I wanted to study medicine.

My father had died, and I spent a substantial part of my final school year in hospital. I still graduated at sixteen, but my results were not sufficient to enter medical school. That was where I had wanted to go. Chemistry later became central to my scientific life, but I do not need to turn the loss of medicine into a blessing in disguise. The two facts can coexist.

During those early hospital years, medical students from Weill Cornell Medical College in Qatar came to learn from my case. I remember how readily the students could finish their visit, while I had no corresponding way to leave the illness behind.

Sometimes the vomiting was so severe that I could not keep down even water. After enough flares, I began recognising the particular intensity of an attack and occasionally guessing the eosinophil count that would appear in the next blood test. That was familiarity with my own history, not a technique for determining blood counts from pain. Circulating eosinophils and inflammation in gastrointestinal tissue do not always tell the same story, and neither measurement can be inferred reliably from symptoms alone.

In 2012, I wrote online about the disease while struggling to find information I could understand. People with related experiences continued finding those words years later. I had not intended to become a meeting point for patients. I was a teenager trying to understand what was happening to me.

My records have used descriptions including eosinophilic gastroenteritis and hypereosinophilic syndrome. These are not interchangeable terms. Later investigations considered serious haematological possibilities, including chronic eosinophilic leukaemia and myeloproliferative disease, which were ultimately excluded. I also received imatinib during that history; treatment with a drug used for certain malignancies is not itself evidence of malignancy. The tests eventually relieved one kind of fear without ending the eosinophilic disease.

The fuller account is in The Life Between Diagnoses, my personal essay on Substack ↗. This page is a companion to the essay, not a substitute for it.

When even water would not stay down.

It is easy to write that I had episodes of vomiting. The phrase does not convey their severity. An attack could begin with abdominal pain and progress to repeated vomiting, until there were times when I could not keep down even water. I would try to drink because I was thirsty and needed the fluid, only to vomit it back up. Food was no longer the question. Even a sip of water could become another failed attempt to do something most people never have to think about.

Thirst is different when drinking does not solve it. Every attempt raised the same practical worry: if I could not retain fluids, how long could I manage without medical help? Telling someone to drink more is sensible advice in many illnesses; during the worst of these attacks it was something I could not simply make myself do. The exhaustion came not only from the vomiting, but from having to try again while knowing what might happen.

I have since read descriptions from other patients with eosinophilic disorders who also spoke of being unable to tolerate water. Recognising an experience is not the same as sharing a diagnosis. In eosinophilic esophagitis, fluid may be difficult to swallow or pass through the esophagus; vomiting during disease affecting the stomach or intestine can be a different event. My medical history documented eosinophilic gastrointestinal involvement, but this symptom alone cannot determine its exact site or mechanism.

Clinical accounts make clear that persistent vomiting and severe intolerance of oral intake can occur in eosinophilic gastrointestinal disease. The 2024 ESPGHAN/NASPGHAN guidance on non-esophageal eosinophilic gastrointestinal disorders ↗ and a 2025 clinical case report of severe gastrointestinal intolerance ↗ provide medical context, not a retrospective diagnosis of my own attacks.

When two observations seem to disagree.

I learned to pay attention to what a test actually measures. A biopsy describes the tissue collected from a particular location at a particular time. A blood count describes a different part of the biological system. Symptoms tell us something important about a person's experience, although they do not on their own establish a mechanism. Disease activity and treatment can change between observations, while sampling can miss heterogeneous inflammation.

A test result and a patient's experience can appear to disagree because they describe different aspects of the condition. I learned to ask what had been measured, when it had been measured, and which aspects of the disease the test could miss. That habit followed me into experimental research.

For years, my treatment involved prolonged glucocorticoid exposure and attempts to control recurrent flares. A six-food elimination diet later brought greater stability to my symptoms. This is the course of my illness and treatment, not evidence that the same approach will help every patient.

Fourteen days waiting for treatment.

At the beginning of the COVID-19 lockdown in 2020, I had another severe flare. I was vomiting while access to hospitals was disrupted. I could not obtain a prescription for glucocorticoids, the medicines that had helped bring previous attacks under control. There were concerns that suppressing my immune response during the pandemic could expose me to additional danger. I was caught between a risk the doctors feared and an illness I was already enduring.

Fourteen days passed before I finally received the prescription. The vomiting continued while I waited. Outside, the world was trying to keep people away from infection; inside, I was trying to get through another day without the treatment I needed. Those two weeks were hell. I remember them as a time when an unprecedented public-health emergency made a familiar illness far more frightening to live through.

The unfinished work between examinations.

Throughout my university education, recurrent illness interrupted classes, examinations and research. I later had to suspend graduate enrolment, while pursuing further study abroad remained medically difficult for years. I continued seeking opportunities for laboratory work, scientific writing and collaboration when my academic progress was interrupted.

What I could choose was how to spend the time and opportunities available to me. I kept returning to laboratories, including roles undertaken without a formal title, because I wanted to understand the experiments and the people doing them. I learned from collaborators in chemistry, biomaterials, imaging, and biology. I helped build the American Chemical Society student community at Qatar University and worked to bring other students closer to instruments and serious scientific conversations. Research did not make the illness disappear. It gave me something that continued through it.

When I resumed graduate study, I returned with questions that were more precise than the ones I had first brought to university. I do not regard persistence as evidence of scientific competence on its own. Competence must still be demonstrated in experiments, decisions, analysis, and work that other researchers can scrutinize.

When illness interrupted a journey.

A severe flare shortly before an important journey required endoscopy and glucocorticoid treatment. Both were responses to an active attack, not precautions for travelling. The approaching departure simply made the timing more difficult.

After years of systemic glucocorticoid treatment, abrupt discontinuation led to adrenal insufficiency associated with suppression of the hypothalamic–pituitary–adrenal axis. My adrenal function later recovered, Alhamdulillah. The 2024 joint endocrine guideline ↗ explains the risks of withdrawal after prolonged treatment and the need for appropriate medical supervision.

A six-food elimination diet later helped me achieve greater stability, but changed the ordinary experience of eating and accepting invitations. My response is a personal observation, not a recommendation for another patient. These experiences have made me attentive to whether a treatment allows people to live differently, as well as whether it changes a biopsy result or a laboratory count.

The questions I want to keep asking.

I have no desire to make chronic illness the central credential of my scientific life. Nor would I remove it from an honest account of how I arrived here. I began with curiosity, continued through uneven circumstances, and accumulated research experiences that made me more aware of how difficult explanation really is.

I want to work at the point where molecular design meets the conditions of living tissue, and where experimental data can challenge beautiful theories. I also want to help build scientific communities in which young researchers can ask difficult questions without needing perfect beginnings. If my own history has changed anything fundamental about how I work, it is my conviction that uncertainty should invite better experiments, not premature certainty.

I still carry those questions into the laboratory. When an observation conflicts with the expected result, I want to know which assumption failed and what measurement would resolve the disagreement.