Getting on with your life

Everyday safety

The aim is sensible precautions, not a shrunken life. Adjust in proportion to how well controlled your seizures are, and revisit it as that changes.

• Bathing. Shower rather than bath where possible, and keep the door unlocked. Drowning is one of the most serious risks in epilepsy, and one of the easiest to reduce with simple precautions.
• Cooking. Use the back plates on the stove, turn pot handles inward, and use a microwave where practical. If you cook on an open fire or a paraffin stove, do it with someone else present and keep well back from the flame.
• Swimming. Swim with someone who knows about your epilepsy and knows what to do — never alone.
• Around the home. Guard open heaters and fires. Consider corner protectors if you have seizures involving falls.
• Medication routine. A pill organiser and a phone alarm prevent the most common trigger of all — a missed dose.

School and studying

Children with epilepsy generally belong in mainstream classrooms. Success depends on what the school actually knows: tell the class teacher and the school office, give them a written seizure plan, and make sure the first-aid steps are somewhere visible in the staffroom.

Tell the other learners too, in language suited to their age. A class that understands what a seizure is does not panic, does not laugh, and does not exclude the child afterwards — and children who have seen a seizure explained to them are far kinder about it than adults expect. Where the child is willing, letting them explain it themselves is often the most powerful version.

Inclusion has to run both ways. A child with epilepsy should never become the reason an outing, a sports day or a practical lesson is cancelled or cut back for everyone else. The question to ask is what this particular child needs in order to take part — not what the class should give up.

Watch for the quieter effects. Absence seizures are routinely mistaken for inattention or daydreaming, and some medication affects concentration and short-term memory. If a child's schoolwork changes, treat it as a medical question before a behavioural one.

Our branches provide training for schools. If a teacher or principal needs support, contact your nearest branch.

Work and your rights

Under South African law, people with disabilities — including people with epilepsy where it substantially limits participation — are protected against unfair discrimination in employment, and employers are expected to make reasonable accommodation.

Reasonable accommodation is not special treatment and not an advantage. It is an adjustment to a job, a workplace or a way of working that removes a barrier, so that an employee with epilepsy can do the work effectively — the same work, judged by the same standard. It is a levelling, not a lowering.

What counts as reasonable depends entirely on the job and the person, so no list of examples is ever complete. Adjusted shift patterns, avoiding work at heights or with dangerous machinery, extra recovery time after a seizure, a change of duties or a quiet place to recover are all common — but they are illustrations, not the boundaries. Epilepsy South Africa publishes fuller guidance: Reasonable Accommodation Guidelines (PDF).

Whether to tell an employer is your decision, and not a legal requirement. Disclosure is usually wise where a seizure at work could put you or others at risk, or where you need specific accommodation. If you do disclose, give your colleagues the practical first aid — most people are willing to help and simply have no idea what to do.

Bear in mind, though, that an employer cannot accommodate what it does not know about. If you choose not to disclose your epilepsy, you cannot expect reasonable accommodation for it, and it is much harder to argue afterwards that a decision was unfair.

If you believe you have been treated unfairly because of epilepsy, our branches can advise you and, where appropriate, advocate on your behalf.

Driving

Driving is regulated. In South Africa you are legally required to declare a condition that could affect your ability to drive safely when you apply for or renew a licence, and there are minimum seizure-free periods before driving is permitted.

Relationships, pregnancy and family

Epilepsy is not a barrier to relationships or to having children. Most women with epilepsy have straightforward pregnancies and healthy babies.

Planning matters, though. Some anti-seizure medications carry risks in pregnancy, and some interact with hormonal contraception. Talk to your doctor before you conceive if you can, so that medication can be reviewed in good time. Never stop medication because you are pregnant or planning to be — uncontrolled seizures carry their own risks. That conversation belongs with your doctor.

Mental health

Anxiety and depression are more common among people with epilepsy than in the general population. Some of that is the disorder itself, some is medication, and a great deal of it is the isolation and stigma that come with it. It is common, it is not weakness, and it responds to treatment.

Our branches offer counselling and run support groups. Talking to someone who has been through the same thing is often worth more than any pamphlet.

Find support near you Seizure first aid

General information only. It is not legal or medical advice, and it does not replace guidance from your doctor or a qualified legal adviser.