Beyond seizures: The invisible burdens people with epilepsy carry

From fatigue and cognitive hurdles to stigma, mental health strain, and disclosure fears, experts explain the unseen challenges people with epilepsy navigate every day.

 

Epilepsy is often imagined only as “the seizure condition”, but specialists say the impact runs much deeper, impacting memory, work, friendships, confidence, and day-to-day independence. Many of these struggles remain hidden, yet they shape how people live, socialise, and plan their future.

 

Dr Nilesh Chaudhary, Senior Consultant Neurologist at Dr L H Hiranandani Hospital, Mumbai, notes, “Epilepsy affects far more than the moments when seizures occur. Many patients face other daily challenges that shape how they function, socialise, and feel about themselves.”  “Epilepsy is not just a neurological disorder — it’s an emotional journey for patients and families who often feel confused, scared, and silenced by stigma. Most is that many people live with symptoms for years without knowing they are experiencing seizures. Episodes like sudden staring spells, brief blackouts, unexplained falls, confusion, or repetitive movements are commonly dismissed as stress or weakness, but these are often the brain’s way of asking for help," says Dr Kunal Bahrani, Chairman and Group Director - Neurology at Yatharth Hospitals.

 

 

The hidden cognitive and physical burden

 

Beyond seizures, epilepsy brings a range of lesser-known symptoms that interfere with daily functioning.

Dr Gaurav Batra, Neurosurgeon (Brain & Spine), Max Super Speciality Hospital, Vaishali, explains that people often face memory problems, an inability to concentrate, general fatigue, and fear that a seizure may occur in public.

 

Medication schedules, disrupted sleep, and the constant need for vigilance create a cycle of tiredness. Dr Chaudhary adds that slowed thinking, dizziness, mood changes, and fatigue can make routine tasks like driving, attending meetings, or even completing a conversation, unexpectedly difficult.

 

These cognitive effects influence productivity, confidence, and a sense of independence. “Many believe their independence is curtailed and they are stigmatised, with apprehensions about driving, jobs, and relationships,” says Dr Batra.

 

Challenges at work and school

 

Epilepsy can directly affect a person’s ability to meet academic or work expectations.

Side effects such as somnolence (abnormal drowsiness), vertigo, and slowed thought process affect concentration and speed. According to Dr Batra, these changes make multitasking difficult and can reduce achievement in school or the workplace.

 

Absenteeism, difficulty maintaining pace, and the need for flexible schedules often become unavoidable. At times, individuals require special accommodations simply to keep functioning and protect their self-esteem.

Subtle cognitive issues can also lead to frustration or self-doubt, says Dr Chaudhary, particularly when performance drops despite effort.

 

Impact on relationships and social life

 

Social participation often becomes restricted, not only because of fears around seizures but also due to stigma and misunderstanding.

 

“Epilepsy stresses family and friendships either through worry, overprotection, or misunderstanding,” says Dr Batra. Friends may withdraw because they feel unsure or uncomfortable. Loved ones may over-monitor activities, limiting independence even when they mean well.

 

Triggers such as flashing lights or sleep deprivation also influence social choices, from late-night outings to certain types of events. Dr Chaudhary notes that these limitations can slowly lead to isolation unless there’s strong communication and awareness.

 

The mental health toll

 

Anxiety, depression, and low confidence are closely linked to epilepsy. “The randomness of seizures creates constant vigilance and fear,” says Dr Batra. Stigma, misconceptions, and isolation further add to emotional stress.

 

Many people struggle with self-image, especially when seizures or side effects interfere with work, relationships, or independence. Dr Chaudhary notes that the combination of uncertainty, mood fluctuations, and social barriers often results in chronic stress or depressive symptoms.

Experts emphasise that mental health support must be part of holistic epilepsy care, not an afterthought.

 

The difficult decision of disclosure

 

Deciding whom to tell, and how much to share, is one of the most sensitive challenges.

“Disclosure may elicit a fear of discrimination or pity,” says Dr Batra. People worry about their job security, academic opportunities, and social acceptance.

 

Experts usually recommend a calm, factual explanation tailored to the situation, outlining safety measures without creating alarm. Dr Chaudhary advises disclosing only to those who need to know and using the moment to build confidence and self-advocacy.

 

When handled well, disclosure can reduce misunderstandings and strengthen support networks.

 

Treatment adherence and barriers to care

 

Maintaining long-term treatment is not always straightforward. Complex medication schedules, side effects, cost of medicines, and limited access to specialists are major barriers. People may forget doses or struggle due to denial or fear of stigma. Dr Chaudhary adds that when side effects of the medicines feel worse than the seizures themselves, patients naturally find it harder to stay consistent.

 

Dr Batra points out that late diagnosis is common in rural or resource-poor settings, which delays proper management. Over time, clear communication with clinicians, simplified routines, and reminders improve adherence and outcomes.

 

Lifestyle adjustments that make a difference

 

While challenges are real, practical strategies help people regain control and confidence.

Key habits include:

 

• Consistent sleep patterns
• A balanced diet
• Avoiding known triggers (such as flashing lights, alcohol, sleep deprivation and others)
• Stress-management practices like mindfulness
• Medication reminders and a seizure diary
• Using a medical ID and maintaining a seizure action plan
• Regular follow-ups with a neurologist
• Supportive peer or community groups

 

Dr Batra notes, routines and awareness tools enhance safety and resilience. Dr Chaudhary adds that these steps help patients maintain independence while navigating daily uncertainties.     

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This report is for informational purposes only and is not a substitute for professional medical advice.