By Dr. Ennapadam S. Krishnamoorthy
We talk loudly about almost everything today. Yet when the subject is epilepsy, voices drop. Whispers replace dialogue. That silence is costly. Epilepsy is not only seizures and scans. It is a lived experience that can sting quietly. It can isolate. It can label. For millions, it becomes a scarlet letter that follows them into school, work, marriage and community life.
This essay invites a different conversation. Less fear. More clarity. Less myth. More humanity.
The truth behind the numbers
More than 23 million people in Asia live with epilepsy. That is not rare. It is here and now. Seventy percent can be seizure free with evidence based care. Seven out of ten. The question is not only whether epilepsy can be treated. The question is why so many are still untreated or under treated.
Medication helps many. Surgery can cure carefully selected candidates. Brain stimulation has an expanding role. We use transcutaneous auricular vagus nerve stimulation in integrated care with encouraging results. Counseling and structured psychosocial support matter just as much. The gap is not only clinical. It is the path that patients must walk to reach care.
Think about the five A’s of access.
- Availability. Is treatment present in the system.
- Accessibility. Can a person reach it in time and space.
- Affordability. Can they pay for it without hardship.
- Acceptability. Does care respect culture, family and personal beliefs.
- Accountability. Do services answer to the person who receives them.
Healing begins only when systems stop failing the people they are built to serve.
How stigma distorts reality
Two decades ago Cross and colleagues described an iceberg of ignorance around epilepsy. An editorial in Neurology called it the Scarlet E. When researchers reviewed media stories they found frequent distortions. Wrong information. Exaggerated risks. Unrealistic promises. It is not only old news. A 2024 Reddit thread titled “My first seizure in public” drew thousands of comments and the most visible reaction was suspicion, not support.
Movies show possession. News shows fear. Real life is different. It is nuanced. It is manageable. It is misunderstood. The remedy is simple to say and hard to practice. Replace caricatures with human stories.
A story that stays with me
Mr S worked with numbers. Then epilepsy made his own life unpredictable. He had about ten seizures a month. He lost confidence, work and relationships. His wife had not been told about his epilepsy before marriage. Resentment and separation followed. He returned to his elderly parents. He had no friends. He had no safety net.
With rational drug therapy and counseling his seizures reduced to two partial events a month. He began working as an office assistant in our hospital program. Social anxiety eased. His emotional health improved. Yet his family life remained fractured. His story reminds us that seizure control is necessary and not sufficient. Recovery has medical, social and emotional layers. The WHO International Classification of Functioning is a practical lens here. Do not ask only what the body shows. Ask how a person lives.
The ICF asks four simple questions.
- What body functions and structures are affected.
- What activities can the person perform.
- How well can they participate at home, work and in society.
Which environmental and personal factors help or hinder.
Care becomes compassionate when we see the whole person.
A humane model from Germany
Germany classifies disability in epilepsy on the basis of lived impact. Mild or rare seizures can qualify for 50 to 60 percent disability. Frequent mild seizures count for 60 to 80 percent. Frequent severe seizures count for up to 100 percent. A person is considered healed only after three seizure free years without medication. That definition protects jobs, opens financial support, and triggers accommodations in education and employment. It replaces doubt with dignity.
Imagine applying the same lens where you live. Job protection. Tax benefits. Extra medical leave. Reasonable accommodations in schools. Quotas that create opportunity. Anti discrimination rights that are enforced. After diagnosis the answer should be protection, not punishment.
Look beyond seizure counts
Global bodies like WHO and the International League Against Epilepsy urge us to shift focus from counts to function. Can a student attend school. Can an adult keep a job. Can a spouse or parent participate in family life. Can a person contribute to the community. Seizure free does not always mean life ready. Families and systems must plan for the life that follows medical control. Especially after surgery, many people need coaching to rebuild routines, roles and identity.
The brain behind the experience
About 70 percent of epilepsies arise in the temporal lobe. This zone shapes memory, emotion and autonomic responses. Sudden anxiety, mood shifts, palpitations and gut sensations can precede events. What looks psychological may be deeply biological. Many report déjà vu or an intense feeling of already lived moments just before seizures.
The psychological story matters too. People with epilepsy often hear mixed messages. Be safe. Stay home. Avoid risk. Over time a tug of war develops between inner needs and social caution. When expression is unsafe the mind protects itself through repression. Feelings go underground and may return as nonepileptic events or chronic body symptoms. That is not weakness. It is adaptation.
Learned helplessness is common in chronic illness. If nothing seems to change, people stop trying. The concept of locus of control is useful here. An external locus says life controls me. Stress and depressive symptoms rise. An internal locus says I influence outcomes. Engagement and resilience improve. Care that gives choices strengthens the internal locus.
The invisible disability
Much of epilepsy is unseen. Depression, anxiety, emotional breakdown and suicidal thoughts do not show on EEGs. They still change lives. The WHO recognises mental health symptoms as a core part of epilepsy disability. Real care listens for the invisible load and responds with continuity and empathy.
What good care looks like
Community education reduces stigma and improves outcomes, especially in low resource settings. In our published work we describe a best practice model that places the neurologist or neuropsychiatrist as clinical lead while a team delivers integrated support. Neuropsychologists, psychologists, social workers, counselors, physical and occupational therapists, and trained community workers contribute in clinic and at home. The prescription includes medicine and more. Therapy. Support groups. Family counseling. Skills training. Peer networks.
Multidisciplinary and multi component care is not a luxury. It is the only way to reach everyone, including those who are not surgical candidates or who cannot access advanced interventions. Science advances at a measured pace. Systems must bridge the time lag with real world support.
Why integration works
Integration is not a slogan. It is a bridge. It respects personal beliefs. It measures progress in suffering reduced and participation gained. It involves families. It allows choice. It blends modern medicine with acceptable traditional practices where evidence and safety permit. Yoga and mindfulness can support sleep, stress control and daily function. Community based rehabilitation aligns with these principles and improves quality of life.
Our toolkit is broad.
- Anti seizure medicines and psychotropics when indicated.
- Epilepsy surgery for selected cases.
- Invasive and non invasive brain stimulation.
- Physical, speech, occupational and social skills therapy.
- Nutrition, sleep hygiene and exercise.
- Psychological therapies that build coping, communication and confidence.
A note on TAVNS
Transcutaneous auricular vagus nerve stimulation is a non invasive and portable option that targets the auricular branch of the vagus nerve. It influences networks that regulate emotion, memory and autonomic function. It should be used under medical supervision. In our integrated program it has been a helpful adjunct for selected patients.
From survival to self actualisation
Think of Maslow’s hierarchy of needs. Safety is the base. Belonging and esteem build on it. The summit is self actualisation. For many with epilepsy every step is harder. Medication may control seizures. Confidence, careers, intimacy and contribution require a wider plan.
The aim is not only seizure control. The aim is a full life. That means education without exclusion. Work with protection and purpose. Relationships with honesty and respect. Community participation by right, not by exception.
How families and communities can help
- Speak openly. Silence breeds myth.
- Learn first aid for seizures and practice it.
- Ask about mood, sleep and stress. Then act on what you hear.
- Support transparency at school and work. Safe disclosure protects.
- Map the five As in your setting and push for change.
- Join or start support groups. Peer voices reduce isolation.
- Choose clinicians who see the whole person and who welcome a team around them.
A closing reflection
Epilepsy is a medical condition. It is also an identity that society too often hands out. We can change that. Replace the scarlet E with three different letters. Empathy. Evidence. Equity.
If you or someone you love lives with epilepsy, remember this. Seizures are not the only story. Meaning, dignity and potential remain available. Take a moment today to ask not only what went wrong, but what might be awakening within. Living with epilepsy invites us to tune in. Did you listen today.
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