I never imagined that the scientific training I believed in would one day abandon me, or that I would, by necessity, become my own diagnostician. For more than a decade my body unraveled in ways that medicine repeatedly failed to explain. What began as pervasive fatigue quickly escalated into a constellation of neurologic and systemic symptoms that intensified in frequency, duration, and severity over time. Weeks of profound weakness left my knees giving way beneath me; episodes that once lasted minutes stretched into hours and then days. I experienced cognitive disturbances so overwhelming I felt “drunk in my own head,” with severe clumsiness that erased my confidence in walking and thinking. I lost my balance and, on multiple occasions, vision would blur or dim altogether. I endured transient ischemic attack (TIA)‑like events, tremors in my hands, eye and toe twitches, and, with the slightest stressor, an episode so extreme that it precipitated rectal prolapse, an event that should never be dismissed or trivialized in clinical care.
Despite mounting evidence of neurologic and immunologic dysfunction (swollen lymph nodes after minimal exertion or stress, repeated emergency visits, and seizures ),the prevailing diagnosis throughout my medical journey in the United States was psychosomatic: mental health crisis. Even after one seizure displaced my right eye in its orbit, the answers remained vague and non‑actionable. At thirty‑something, with symptoms stacking upon one another, my brain and body felt increasingly alien.
It was deeply frustrating and, at times, devastating. When the U.S. health system reached the limit of its willingness to investigate, I made a choice that would change my life: I became my own researcher.
I pursued medical certifications, immersed myself in clinical literature, and allowed my lived experience to guide scientific inquiry. In 2022 I crossed the border into Mexico with one goal: to find answers that I could not access at home. I successfully petitioned for admission to a PhD program in Interdisciplinary Health Sciences at the University of Texas at El Paso. There, I defended the university’s first autoethnographic dissertation using my own body, medical records, and lived experience as data, graduating with a deep appreciation for both patient narrative and academic rigor. It was through this work that I finally received a definitive diagnosis: relapsing myelin oligodendrocyte glycoprotein antibody‑associated disease (MOGAD), a rare, often misunderstood autoimmune demyelinating disorder of the central nervous system.
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MOGAD can present with optic neuritis, myelitis, encephalopathy, and brainstem symptoms, and patients frequently experience relapses that worsen over time (Jarius et al., 2023). What makes MOGAD clinically challenging is not only its rarity but its heterogeneous symptom profile: fatigue, blurred vision, tremors, cognitive impairment, and balance disruption, exactly the experiences that dominated my decade of unexplained illness (Salama et al., 2023). Longitudinal studies indicate that many patients with MOGAD endure relapsing courses with cumulative disability when the disease is unrecognized (Huda et al., 2019).
Yet, what quantitative studies alone cannot capture is the qualitative reality of living in a body that medicine repeatedly tells you is “normal” when you know, with every fiber of your being, that it is not. The stories patients tell (of incremental losses, of symptoms dismissed as anxiety, of physical events misattributed to psychological causes) are not anomalies; they are urgent data points. Personal narratives bridge the space between lab values and human experience, reminding clinicians that science without empathy fails at the bedside (Greenhalgh et al., 2016).
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My journey highlights a systemic problem: when patients’ experiences do not conform neatly to diagnostic templates, too often medicine defaults to psychosocial explanations. When clinicians fail to see suffering, or when systems cannot adapt to complexity, patients are left to become experts of their own bodies. We learn immunology, read pathology reports, scrutinize MRI scans, and decode medical literature not because we want to, but because we must.
Being forced into self‑expertise is an indictment of systems that should protect us. When I finally learned the name of my disease — when MOGAD became more than a suspicion — I felt both vindicated and poignantly aware of what had been lost: years of productivity, clarity, confidence, and peace.
Medicine, at its best, learns from stories. It evolves when clinicians listen, when research values lived experience alongside biomarkers, and when health systems honor suffering rather than dismiss it. We owe it to each other (to patients and clinicians alike) to build spaces where no one feels compelled to become their own expert simply to be believed or cared for.
Medicine, at its best, learns from stories. It evolves when clinicians listen, when research values lived experience alongside biomarkers, and when health systems honor suffering rather than dismiss it.
References
Greenhalgh, T., Howick, J., & Maskrey, N. (2016). Evidence‑based medicine: a movement in crisis? BMJ, 348, g3725. https://doi.org/10.1136/bmj.g3725
Huda, S., Whittam, D., Watson, L., Woodhall, M., Penalva, R., & Vincent, A. (2019). Epidemiology and outcomes of MOG antibody disease: A multicenter study.Neurology, 92(22), e237‑e247. https://doi.org/10.1212/WNL.0000000000007596
Jarius, S., Ruprecht, K., Kleiter, I., et al. (2023). MOG antibody‑associated disease: International recommendations on diagnosis and treatment. Journal of Neuroimmunology, 380, 577712. https://doi.org/10.1016/j.jneuroim.2023.577712
Salama, S., Whittam, D., & Vincent, A. (2023). Clinical spectrum and pathophysiology of MOG antibody‑associated disease. Expert Review of Neurotherapeutics, 23(5),293‑305. https://doi.org/10.1080/14737175.2023.2001576
