My Long COVID Journey Anniversary: Survival Before Recognition May 28, 2020 marks the beginning of my long COVID journey, a date permanently embedded in my body, memory, and life. On that day, I took a single, carefully planned trip to Walmart Pharmacy in Tracy to pick up my child’s medication. Every recommended precaution guided my actions. A mask stayed firmly in place. Physical distance remained constant. Public health guidance shaped every movement. Nevertheless, despite strict adherence to safety protocols, COVID entered my life—and refused to leave quietly.
In the weeks that followed, my health deteriorated in ways medicine had not yet learned to recognize. At that moment in history, vaccines did not exist. Long COVID had no name. Neurological complications received little attention. Meanwhile, symptoms escalated rapidly, unpredictably, and without explanation.
Before Medical Recognition My Long COVID Journey Anniversary: Survival Before Recognition
When My Body Spoke Before Medicine Had Language
Before clinical definitions caught up, my body delivered unmistakable warnings. Initially, searing migraines surfaced and intensified. Soon after, physical strength faded into weakness. Ultimately, those early signals escalated into a full medical emergency.
Suddenly, numbness overtook the left side of my body. Shortly afterward, chest pain emerged. As dizziness worsened, stamina collapsed. Eventually, my body no longer felt capable of sustaining itself.
Because of this rapid decline, emergency physicians rushed me into the ER under a stroke alert. At the same time, COVID tests failed to explain what was happening. During that early phase of the pandemic, clinicians rarely recognized stroke-like COVID complications—especially in patients without classic respiratory symptoms.
This anniversary does not simply recount illness. Instead, it stands as a marker of survival, truth, and visibility—for every long hauler whose symptoms arrived long before recognition followed.
Early Long COVID Neurological Symptoms Before Vaccines
Why My Experience Defied the Early COVID Narrative
During early June 2020, clinicians largely framed COVID-19 as a respiratory disease. However, my experience contradicted that assumption entirely.
Instead of cough or shortness of breath, symptoms arrived neurologically—rapidly, intensely, and persistently. From the very beginning, COVID attacked my nervous system rather than my lungs.
How COVID Triggers Stroke: What Science Later Confirmed
COVID and Stroke Link Explained for Long COVID Survivors
At the start of the pandemic, medical guidance viewed COVID-19 almost exclusively through a respiratory lens. Over time, however, scientific evidence revealed a far more dangerous reality. COVID operates as a vascular and inflammatory disease, capable of damaging blood vessels, disrupting brain function, and destabilizing the nervous system.
Because of this systemic impact, COVID and stroke became biologically linked long before clinical guidelines formally acknowledged the connection.
Stroke Mechanisms in COVID: Inflammation, Clotting, and Vascular Injury
Inside the body, COVID initiates a cascading vascular response:
- To begin with, the virus triggers widespread systemic inflammation
- Subsequently, inflammation damages the endothelium—the protective lining of blood vessels
- As damage accumulates, blood becomes abnormally prone to clotting
- Ultimately, oxygen delivery drops, particularly to the brain
This progression explains why COVID increases the risk of:
- Ischemic stroke caused by blocked blood flow
- Transient ischemic attacks (mini-strokes)
- Silent strokes without classic warning signs
- Stroke-like neurological events, even among younger and previously healthy individuals
Crucially, severe respiratory illness is not a prerequisite. Many early long COVID survivors presented primarily with neurological symptoms rather than lung failure.
Why COVID Stroke Risk Went Unrecognized Early
Early Pandemic Blind Spots That Delayed Diagnosis (2020)
Throughout early 2020, several systemic limitations obscured the COVID-stroke connection:
- Limited and inconsistent testing capacity
- Narrow diagnostic criteria focused on respiratory symptoms
- Absence of a long COVID diagnosis
- Underestimation of neurological complications
As a result, clinicians frequently attributed stroke-like symptoms to anxiety, stress responses, or unrelated conditions rather than COVID itself.
Later research and updated guidance from the Centers for Disease Control and Prevention and the NIH confirmed what long haulers experienced firsthand:
COVID significantly increases stroke risk during acute infection and for months afterward.
COVID, Stroke, and the Brain: Why Neurological Symptoms Dominated
How Long COVID Disrupts the Nervous System
COVID affects the brain and nervous system through multiple overlapping pathways:
- Direct viral impact on nervous tissue
- Microclots obstructing small cerebral blood vessels
- Autoimmune activation that causes the body to attack itself
Because of these mechanisms, neurological long COVID symptoms commonly include:
- Severe, unrelenting migraines
- One-sided numbness and weakness
- Chest pain combined with persistent dizziness
- Profound loss of physical stamina
- Cognitive disorientation and confusion
As these symptoms intensified, emergency teams initiated a stroke alert. Yet at that time, clinicians lacked sufficient evidence to connect neurological events to COVID—particularly in patients without respiratory distress.
When COVID Complications Lacked Clinical Validation
By mid-2020, medical guidance still lagged behind patient reality.
Stroke, Diabetes, and Hypertensive Crisis: Later Recognition
Over time, mounting evidence reshaped clinical understanding:
- Research linking COVID to stroke and clotting risk expanded in late 2020 and throughout 2021
- Evidence connecting COVID to sudden Type 2 diabetes onset gained traction during 2021–2022
- Studies documenting hypertensive crisis associated with long COVID emerged alongside cardiovascular findings in 2021
Eventually, public health organizations updated diagnostic and treatment guidance. However, early long haulers lived through these complications before validation existed..
Living as a Long COVID Survivor
Long COVID does not mark a temporary chapter—it creates a parallel life.
Recovery demanded sustained effort across multiple dimensions:
- Continuous medical advocacy
- Detailed symptom tracking and documentation
- Deep emotional resilience
- Ongoing work to rebuild trust in my body
Through this process, survival evolved into leadership. Visibility transformed into responsibility.
Why Long COVID Survivor Stories Still Matter
Even now, millions remain undiagnosed, dismissed, or misunderstood. For that reason, sharing these stories matters—not for sympathy, but for truth, policy change, and equitable care.
This anniversary does not focus on the virus alone. I would love to see more study on the survivors and how to create better outcomes. The interest honors the cost of being early—and the power of remaining visible.
A terrifying reality that is even more terrifying today is that I am one of a half dozen patients with the serious intensity of Stroke, Neurological, heart and COPD. Science and study seems to only study those who died. As someone who does not want to be that statistic, I would like to see rigorous study of those of us living!
FAQs: COVID, Stroke, and Long COVID
Q: What were early long COVID symptoms before vaccines?
A: Early long COVID symptoms frequently involved neurological issues such as severe migraines, numbness, dizziness, weakness, and stroke-like events—often without respiratory symptoms.
Q: When did doctors officially recognize stroke as a COVID complication?
A: Large-scale studies linking COVID to increased stroke risk began emerging in late 2020 and expanded significantly throughout 2021.
Q: Can COVID trigger diabetes?
A: Yes. Peer-reviewed studies since 2021 confirm that COVID infection can contribute to sudden onset Type 2 diabetes.
Other My Long COVID Journey Anniversary: Survival Before Recognition Resources
- CDC Long COVID Guidelines
- Long COVID Signs and Symptoms | Long COVID | CDC
- Lingering Long COVID Recovery
- Long COVID Clinics and Support
- Long COVID-19 | Northwestern Medicine
- NIH Long COVID Research
- The Lancet: Long COVID Fatigue Study
- Tools and Worksheets
