Findings

Our investigation reveals significant barriers to Long COVID care in India, highlighting systemic challenges that affect both patients and healthcare providers. Through interviews with healthcare professionals and patients across diverse geographic and socioeconomic backgrounds, we identified three major areas of concern that collectively illustrate the complex landscape of Long COVID healthcare access in India.

Accessing Long COVID Care and Treatment in India

Patients Struggle to Get Proper Diagnosis & Treatment

Healthcare providers often fail to identify and diagnose Long COVID due to the absence of standard diagnostic tests, leading to frequent misdiagnosis and treatment delays. As one specialist noted: “Many doctors don’t even acknowledge Long COVID exists, so patients are left without proper care pathways.”

Geographic disparities exacerbate these challenges, with specialist shortages in rural areas forcing patients to undertake burdensome journeys for care. India’s delayed national Long COVID guidelines (released in 2021, updated in 2022) left physicians relying on care protocols from other countries during the critical early period of the pandemic.

Eroded Trust in Patient-Provider Relationships

Healthcare professionals often fail to recognize Long COVID or refuse to acknowledge the condition. Patients are frequently dismissed with symptoms attributed to stress or anxiety—particularly women, low-income, and rural patients. As one patient shared: “The doctor told me it was all in my head and that I should just rest more.”

Patients can wait years for acknowledgment of their Long COVID, and healthcare specialists admit that many people, including physicians, invalidate and refuse to acknowledge Long COVID as a legitimate medical condition.

Pathways of Care

Long COVID clinics opened briefly but closed, most likely due to lack of sustainable funding. Early patient registries stalled, losing critical data on Long COVID’s impact in India and the capacity to coordinate research among multiple locations.

Some patients were also skeptical of the effectiveness of these clinics, mentioning they encountered the same dismissive attitudes found in general healthcare. While Long COVID clinics were short-lived, patients continue to require long-term healthcare.

Without functioning clinics, patients bounce between specialists or give up on care altogether. This systemic unpreparedness left primary care doctors overburdened, with no standardized referral system for Long COVID patients.

Patient Support Groups and Traditional Medicine Fill the Gaps

Online patient communities provide critical emotional and practical help. Grassroots networks share symptom management tips and recommend trustworthy doctors. Without access to formal healthcare, these patient groups become lifelines.

To manage symptoms, patients turn to low-cost alternatives that have limited to no evidence-based support, although traditional medicine practices are culturally rooted and increasingly studied for Long COVID symptom management. When routes of care within allopathic medicine fail, patients turn to unregulated treatments.

Socioeconomic and Geographic Barriers to Care

Financial Hardship Limits Treatment Access

Long COVID patients struggle financially due to loss of income and crippling out-of-pocket costs for tests, specialist visits, and medications—with many forced to abandon care altogether. Tests and specialist visits drain patients’ financial savings, with little insurance coverage.

Lost income due to chronic illness and disability worsens financial strain, especially for rural and daily wage workers. As one patient explained: “I had to choose between buying medicines and feeding my family.”

Those with family connections to physicians or higher incomes bypass systemic barriers, securing faster diagnoses and specialist care. Rural and low-income patients disproportionately rely on underqualified providers or untested alternatives.

Urban vs. Rural Access Disparities

During Delta COVID-19 waves, rural health systems collapsed. Initial rural skepticism about COVID-19 left lasting mistrust in healthcare systems and gaps in Long COVID awareness.

Many rural patients attribute symptoms to “weakness” or poverty rather than Long COVID, delaying care. Community health hubs became critical lifelines as Long COVID emerged.

Gender Bias Compounds Healthcare Access Barriers

Women with Long COVID face dismissal of fatigue and menstrual-health related symptoms, with cultural norms discouraging seeking help for health concerns. Rural women’s mobility is further restricted by gendered control over finances and transportation.

Urban working women report hiding symptoms due to workplace stigma. As one female patient noted: “I couldn’t tell my employer about my condition because I was afraid of losing my job.”

Impact of Long COVID

Stigma Towards Acute COVID-19 and Chronic Illness

During 2020–2021, fear and misinformation led to severe social ostracization of individuals with acute COVID-19 disease. This deep-seated stigma extended to people with Long COVID.

Stigma and societal perceptions of chronic illness deter disclosure of having Long COVID due to fears of jeopardizing marriage prospects or social standing. Mental health struggles are pervasive, with patients reporting depression, social neglect, and resentment over their diminished capacity to meet domestic or workplace expectations.

Long COVID has significantly disrupted India’s workforce across formal and informal sectors, with debilitating symptoms like fatigue, cognitive impairment, and chronic pain forcing workers to reduce hours, change jobs, or stop working entirely.

The socioeconomic consequences are stark, particularly for laborers and daily wage earners. Even white-collar professionals with Long COVID face workplace discrimination, with employers often dismissing the condition’s severity.

Clinicians emphasize that Long COVID disproportionately affects India’s productive-age population, pushing many into financial precarity or reliance on family support. As one healthcare provider observed: “We’re seeing people in their prime working years unable to maintain their livelihoods due to this condition.”

Long COVID affects not just patients but entire family systems. Caregiving responsibilities often fall disproportionately on family members, particularly women, creating additional strain on household resources and relationships.

Social isolation is common as patients struggle to maintain relationships while managing unpredictable symptoms. The invisible nature of many Long COVID symptoms makes it difficult for others to understand the severity of the condition, leading to social withdrawal and loneliness.