‘I look normal, but nothing is normal’: The invisible toll of multiple sclerosis on young Indians

For many Indians living with Multiple Sclerosis (MS), the disease does not begin with dramatic symptoms or a medical emergency. Instead, it often arrives quietly through blurred vision, unexplained fatigue, dizziness, numbness, imbalance or persistent brain fog.

These symptoms are frequently dismissed as stress, exhaustion, migraine or vertigo. Yet beneath them, the body's immune system may already be attacking the brain and spinal cord, causing damage that can become irreversible if left untreated.

As India marks World Multiple Sclerosis Day on May 30, patients, neurologists and advocacy groups are drawing attention to what many describe as one of the country's least understood chronic neurological disorders, an "invisible illness" that disproportionately affects young adults during some of the most important years of their lives.

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MS is a chronic autoimmune condition that disrupts communication between the brain and the rest of the body. While global awareness has increased over the past decade, understanding of the disease in India remains limited despite growing numbers of diagnoses.

Experts estimate that more than two lakh people in India have been diagnosed with the condition, with women between the ages of 20 and 40 particularly vulnerable.

For patients, the consequences extend far beyond health. The disease often strikes during a period associated with career building, marriage, raising children and financial planning, creating a burden that affects not only individuals but entire families.

‘People think I'm fine because I look normal’

For Mumbai-based public relations professional Asmita More, the diagnosis in 2023 fundamentally altered everyday life. “What started as blurred vision slowly turned into relapses, emergency hospitalisations, body pain, brain fog and depression,” she said.

“The hardest part is that people cannot see the illness. At work, tasks require ten times more effort than before, but because I look normal, people think I’m fine.”

The cognitive effects have been among the most difficult to manage. “Conversations become difficult because the chain of thought gets disrupted. Cognitive challenges affect articulation and confidence,” she said.

Like many people living with MS, More also encountered barriers beyond healthcare. Obtaining official disability recognition proved to be a challenge. “Invisible disabilities like MS are still poorly understood in India. Patients often have to run from one department to another because there is no clear framework for neurological disabilities,” she said. “What people with MS need is empathy and flexibility.”

A diagnosis that changed a family's future

For dentist and mother Aditi Thakur, the first signs appeared in 2020. “It started suddenly with dizziness and difficulty seeing the time correctly. Initially, I was treated for vertigo, but after MRIs and a spinal tap, my diagnosis of MS was confirmed,” she recalled.

“I had always considered myself healthy, so the diagnosis was extremely shocking.” The impact extended beyond her health. “My daughter was barely a year old when I was diagnosed. I had always dreamt of having two children, but doctors advised against another IVF procedure because it could trigger a relapse,” she said.

“MS prevented me from having a second child, and many women silently struggle with these realities.”

Despite the setbacks, she credits timely intervention and family support for helping her regain stability.

“Early treatment helped slow the progression of the disease and allowed me to continue living a fulfilling life. Family support became my biggest strength,” she said.

The cost of delayed diagnosis

Neurologists say delayed diagnosis remains one of the most significant challenges facing MS patients in India.

Because symptoms can appear intermittently and mimic more common conditions, patients often spend months or even years consulting multiple specialists before receiving a definitive diagnosis.

The delay can have lasting consequences.

“Multiple Sclerosis is a lifelong, unpredictable journey that dismantles young patients’ independence from the inside out,” said Dr Reji Paul, senior neurologist at Aster Medcity, Kochi.

He argues that treatment strategies must evolve to prevent avoidable disability. “For decades, the prevailing approach has been escalation therapy — starting with less effective drugs and stepping up only after the patient worsens,” he said.

“In MS, time is brain. Waiting for a patient’s condition to progress before moving them to high-efficacy therapies can result in irreversible neurological damage.”

According to neurologists, newer disease-modifying therapies have significantly improved the outlook for many patients by reducing relapses and slowing disease progression. However, access remains uneven, particularly outside major urban centres.

A growing call for comprehensive care

The need for specialised treatment pathways is prompting healthcare institutions and patient groups to strengthen support systems.

On World Multiple Sclerosis Day, healthcare professionals and advocacy organisations renewed calls for greater awareness, earlier diagnosis and multidisciplinary care. Hospitals are increasingly establishing dedicated MS services that combine neurological treatment with rehabilitation, counselling and long-term monitoring, reflecting a growing recognition that the disease requires lifelong management rather than episodic care.

Dr Praveen Gupta, chairman of the Marengo Asia International Institute of Neuro and Spine, said early intervention can significantly alter outcomes.

“MS is an autoimmune disease that causes multiple attacks on the nervous system, leading to significant morbidity among young people. However, if we diagnose MS early and initiate therapy promptly, we can significantly improve the patient journey and help patients maintain a good quality of life,” he said.

Patient support organisations echo that message.

“Early diagnosis and timely treatment are critical because they can help prevent disability and enable patients to continue leading active and productive lives with the support of improved disease-modifying therapies,” said Bipasha Gupta, chairperson of the Delhi chapter of the Multiple Sclerosis Society of India (MSSI).

Founded in 1985, MSSI now operates through nine chapters across the country, providing counselling, physiotherapy, home nursing support and subsidised services for patients and caregivers.

Beyond medicine: A policy challenge

Experts argue that the burden of MS is not merely a healthcare issue but also a social and economic one.

The disease affects people in their most productive years, often reducing their ability to work while increasing long-term healthcare costs and caregiving responsibilities.

Dr Paul believes India's healthcare system remains largely reactive when it comes to chronic neurological conditions.

“While government programmes rightly prioritise stroke and trauma care, chronic neurodegenerative disorders have no structured national home,” he said.

He called for a dedicated government-backed programme for neurological diseases, broader insurance coverage for MS therapies and disability assessment frameworks that better recognise invisible disabilities.

For patients like More and Thakur, such reforms would mean recognition of a reality that often goes unnoticed.

MS may leave no visible scars, but its impact is felt every day — in interrupted careers, altered family plans, cognitive struggles and constant uncertainty.

As awareness grows and treatment options improve, patients and advocates hope India will begin to see what has long remained hidden: an invisible illness that is quietly disrupting thousands of young lives.