Living in Limbo

Living in Limbo: Chronic Fatigue and the Quiet Crisis of Uncertainty

The future of U.S. medical care is in a state of profound uncertainty. Driven by soaring costs, persistent physician shortages—particularly in primary care—an aging population with increasing chronic care needs, and ongoing regulatory shifts, the affordability crisis has placed immense strain on everyday patients, especially those living with chronic disabilities. Workforce gaps, access limitations, the rapid integration of advanced technologies, shifting care models, and unstable funding streams have combined to create an environment that is not only stressful, but increasingly frightening for those who depend on consistent, equitable care.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is an unpredictable—and almost always permanent—sentence of extreme, indescribable exhaustion. In 2017, I suffered an anoxic brain injury caused by a contraindication of medications administered during the post-operative phase of ankle surgery. I permanently lost 60% of my hearing, leaving my left ear at 70–90 dB and my right ear at 50–75 dB. I also sustained significant neuropathy affecting my entire right side, developed gait instability and balance impairment, experienced difficulty with fine motor skills, and developed paresthesia in my extremities—along with severe, unrelenting chronic fatigue. Ischemia was visible on MRI immediately following the event. Given that anoxic brain injuries carry a survival rate of only 10–22%, with poor outcomes in more than 75% of survivors, the physicians I initially saw believed I would remain permanently cognitively impaired. Nevertheless, through extraordinary effort and perseverance, I was able to return to UC Berkeley, complete my undergraduate degree, and later earn a graduate degree and post-graduate certification from Johns Hopkins.

Fatigue following an anoxic brain injury (ABI) is, in fact, common. Because the injured brain must exert significantly more effort to perform basic cognitive and physical functions, the resulting exhaustion is both profound and unrelieved by normal rest. This fatigue affects every aspect of daily life, yet remains poorly understood. Its invisibility, the complexity of neurological systems involved—particularly structures such as the Ascending Reticular Activating System (ARAS)—and the fluctuating presentation of cognitive and physical symptoms all contribute to widespread misunderstanding. As a result, navigating the already-fractured U.S. healthcare system becomes even more obstructed by disbelief and systemic barriers.

This fatigue does not resolve with rest—even after extended sleep. Instead, the constant depletion leads to social isolation, diminished opportunities for meaningful participation, and significant barriers to rehabilitation.

Why It’s Misunderstood

Invisibility: Fatigue does not appear on standard imaging and is often mistaken for ordinary tiredness, despite its deep neurological and muscular impact and its resistance to sleep.

Misinterpretation: It is frequently misread as laziness or lack of motivation, even though survivors often want to engage but lack the neurological energy to do so—leading to unfair judgment.

Lack of awareness: Even survivors may struggle to recognize its onset, only realizing its severity when cognitive function abruptly collapses, as ABI itself impairs self-awareness.

The Reality of What It Feels Like

Mental fatigue: The brain expends extraordinary effort to think, focus, and process information, resulting in rapid exhaustion.

Physical fatigue: Simple movements require disproportionate effort, affecting mobility and balance.

Fluctuating nature: Symptoms vary throughout the day and worsen after mental or physical exertion, such as shopping or conversation.

The Results

Brain structure damage: Injury to regions responsible for alertness—particularly the ARAS—disrupts baseline neurological function.

Inefficient processing: The brain becomes metabolically inefficient, demanding excessive energy for basic tasks.

Associated conditions: Depression, anxiety, and chronic pain frequently compound fatigue.

The Impact

Quality of life: Significantly diminished, affecting relationships, employment, and daily independence.

Key Takeaways

It is critical to recognize that ABI-related fatigue is real, neurologically measurable, and fundamentally different from ordinary tiredness. Education, pacing strategies, and long-term support systems are essential for preserving any quality of life.

Because ABI-related fatigue does not follow predictable patterns, healthcare systems—both in the U.S. and globally—often fail to acknowledge the illness itself. In the context of mounting instability in U.S. healthcare access and insurance coverage, this uncertainty becomes not merely medical, but existential.

ME/CFS in the Current U.S. Healthcare Landscape

The hallmark symptoms of ME/CFS—severe fatigue, post-exertional malaise, and unrefreshing sleep—have persisted for nearly ten years in my case and represent a permanent consequence of my anoxic injury. Cognitive impairment and orthostatic intolerance affect an estimated 0.89% of the population, predominantly women (FOX 13 Tampa Bay, 2025). While these symptoms are less severe for me, experts estimate that only about 15% of individuals with ME/CFS are correctly diagnosed, largely due to the absence of definitive diagnostic tests and significant symptom overlap with other conditions (FOX 13 Tampa Bay, 2025).

This scientific ambiguity compounds personal suffering. The precise etiology of ME/CFS remains unknown, though prevailing hypotheses suggest exaggerated immune responses following viral infections such as Epstein-Barr virus or COVID-19, alongside metabolic, endocrine, and neurological dysfunctions (Knauf, 2023). Researchers broadly agree that ME/CFS has a multidimensional etiology rather than a single cause—yet this uncertainty complicates treatment, disability recognition, and insurance coverage.

There is currently no cure for ME/CFS. Treatment relies on individualized symptom management, including pacing, dietary support, mobility exercises, and occasionally cognitive behavioral therapy—none of which guarantee improvement (Knauf, 2023). Fewer than 10% of patients fully recover, and unemployment rates range from 35% to 69%, far exceeding those associated with multiple sclerosis (Knauf, 2023). The economic burden is staggering, with annual U.S. costs estimated between $17 and $24 billion.

Beyond physical limitation lies a quieter devastation: isolation. A narrative review by Boulazreg and Rokach (2020) characterizes ME/CFS as a profoundly lonely condition, marked by social withdrawal, identity loss, and alienation—often intensified by stigma and medical dismissal. Long mischaracterized as psychosomatic, ME/CFS is now formally recognized as a stigmatized illness, yet disbelief persists even within clinical environments (Boulazreg & Rokach, 2020).

Recent qualitative research highlights how this dismissal produces what philosopher Miranda Fricker terms epistemic injustice. Patients’ lived experiences are frequently doubted, minimized, or dismissed entirely within healthcare systems worldwide. This deepens psychological distress, exacerbates financial instability, and creates an opaque future defined by precarious employment, unstable insurance access, and fragmented care (Surendran & Jose, 2025).

In an era when access to healthcare in the United States feels increasingly fragile, individuals living with ME/CFS are forced to navigate illness without clear answers, adequate support, or institutional trust. Until research, policy, and public understanding evolve, chronic fatigue remains not only a medical condition—but a prolonged state of limbo, one that has already shaped—and will continue to shape—the lives of countless people facing an uncertain future.