Epilepsy is a medical condition, but living with it is about much more than seizures and medicine. There is the worry about when the next seizure will come, the questions from relatives, the decisions about what to tell a school, an employer or a future spouse. Counselling gives you a place to work through all of this, alongside the care you get from your neurologist.
Why counselling can help when you live with epilepsy
The World Health Organization (WHO) notes that people with epilepsy have higher rates of anxiety and depression, and that many face stigma and discrimination. It may be worth talking to someone if you:
- Dread the next seizure, or avoid going out, travelling or being alone because of it.
- Feel low, hopeless or angry about living with epilepsy.
- Hide your condition at school, college or work and feel the strain of keeping the secret.
- Feel smothered by family members who will not let you do anything on your own.
- Worry about marriage, children or what your in-laws will think.
- Struggle with sleep, memory or concentration and feel frustrated.
- Have just been diagnosed and feel shocked or lost.
What epilepsy counselling looks like
- Cognitive behavioural therapy (CBT). In plain words: noticing fearful or harsh thoughts, such as "I will have a seizure in public and everyone will laugh", checking how true they are, and taking small, planned steps back into the activities you avoid.
- A safety plan, not a cage. Working out with you and your family which activities are safe, which need a simple precaution, and which to discuss with your neurologist, so that worry does not quietly shrink your life.
- Acceptance-based approaches. Learning to make room for uncertainty while still doing what matters to you.
- Problem-solving. Thinking through practical questions such as whether and how to tell an employer.
- Family sessions. Helping parents, spouses or siblings understand epilepsy and support you without over-protecting you.
Stigma at school, at work and in the family
Many people in India still hear myths about epilepsy: that it is caused by spirits, that it is contagious, or that marriage will make it go away. None of these is true, and they can hurt. Whether and how you tell your school, workplace or future in-laws is your choice. A counsellor can help you decide what to say, practise saying it, and handle the reactions. For questions about driving, insurance or disability rules, the Indian Epilepsy Association has resources, and your neurologist can advise you. For marriage questions in particular, see epilepsy and marriage in India.
For parents of a child with epilepsy
Watching your child have a seizure is frightening, and many parents live on high alert afterwards: sleeping in the child's room, keeping them home from trips, worrying every time the phone rings. Counselling can help you:
- Manage your own fear and exhaustion.
- Balance safety with letting your child grow, play and become independent.
- Talk with teachers so the school knows what to do in a seizure.
- Support brothers and sisters who may feel scared or left out.
- Help a teenager handle friends, exams and their own feelings about epilepsy.
Children and teenagers can also have their own sessions. See our page on child psychologists online.
Working with your neurologist and psychiatrist
A counsellor does not change your epilepsy treatment. Never stop or change epilepsy medicine without your doctor. If low mood or anxiety is severe, a psychiatrist can assess you and make sure any treatment fits with your epilepsy medicine. Your neurologist remains in charge of seizure care; you can read more on our main epilepsy page.
Some people are told by their neurologist that their attacks are not epileptic seizures but functional or dissociative seizures. These attacks are real and not "put on". After a neurologist's assessment, talking therapy is often a central part of treatment, and a psychologist or counsellor can help.
Things that can help between sessions
- Write down your seizure plan and share it with the people you spend time with. Knowing others can help often reduces the fear of going out.
- Take back one avoided activity at a time, starting with the least frightening, such as a short walk to a nearby shop with a friend.
- Protect your sleep, since tiredness affects both mood and seizures.
- Talk to someone who understands, such as a friend, a support group or a counsellor, rather than carrying the worry alone.
How many sessions, and does it work online?
For anxiety or low mood linked to epilepsy, many people meet weekly or every two weeks for a few months, though this varies. Online sessions work well for counselling and save tiring journeys. Choose a time when you are rested, and let the counsellor know your seizure plan and an emergency contact, just in case.
Choosing a counsellor and your first session
Choose someone who speaks your language and, ideally, has worked with people with long-term health conditions. Fees are shown on each provider's card, and many providers offer a free first session. In the first session you will talk about your epilepsy, how it affects your life, and what you want to change. You might leave with one small step to try, such as the worry time technique for constant "what if" thoughts. If worry is the main problem, our page on anxiety therapy online explains more.
Free support and support groups
Tele-MANAS (14416 or 1-800-891-4416) offers free mental health support 24×7. Meeting others who live with epilepsy can also help; see our checked list of epilepsy support groups in India. Mindara is planning a free monthly online support circle, coming soon.
When to get urgent help
Call 112 if a seizure lasts more than 5 minutes, if seizures come one after another, or if someone is injured or has trouble breathing. If you have thoughts of harming yourself, call Tele-MANAS on 14416 or 112 now.
