Epilepsy awareness


4-5 minute read. 

 

Today, on Epilepsy Awareness Day, I want to share how epilepsy affects not only those who live with it but also the people around them.

 

Growing up with a parent who had epilepsy, I had no guidance to help me understand this complex condition. It was rarely mentioned in the media, on TV, or in books. There was nothing around me to help make sense of what our family was going through.

 

Disabilities can have a deep, generational impact—but my hope is that, through awareness and understanding, families can find healing.

 

Epilepsy is often misunderstood because it is an invisible condition.  Just because someone appears to function well day to day does not mean that they can always fully meet their own needs. Managing epilepsy can be challenging both physically and emotionally.

 

The Emotional Impact of Epilepsy

 

Living with epilepsy can feel incredibly isolating. Because the condition is not always visible, people can struggle to understand the needs of those affected. At times, when epilepsy is acknowledged people can feel like they are a burden. This can make socialising and usual daily routines more difficult.

 

The Impact of Families and Carers

 

Epilepsy doesn’t just affect the individual; it also deeply impacts their family members and caregivers. 

 

It can be frightening for someone to come out of a seizure as they often feel disorientated and not sure how they got there. In these moments it’s helpful to stay calm and give reassurance. They may need a quiet place to rest until they feel okay to continue with their day.

 

For family members and carers, witnessing a seizure can be distressing. It is natural to feel overwhelmed. If possible staying calm can make all the difference but you may feel you need help from others at times. Onlookers can really help here by offering a reassuring presence and supporting the caregivers, in turn putting them at ease.

 

More Than Just Seizures

 

Epilepsy affects more than just the moment when the seizures occur. The condition can cause extreme fatigue, difficulties with concentration and side effects from medication such as drowsiness. This can make daily life challenging. Patience and understanding from others are essential and so awareness is really helpful.

 

Recognising the Role of a Carer

 

Many people who support a loved one with epilepsy may not always identify as being a carer because the person they care for is often capable of managing day to day tasks. However, epilepsy is unpredictable and that can create ongoing stress for family members. Being compassionate with yourself can really help as you are likely carrying a huge emotional weight.

 

Types of Seizures

 

There are 6 different types of seizures, and they can all look different. Here are a few:

 

Focal aware seizures - The person remains conscious but may experience unusual sensations or movements. 

 

 Absence seizures - The person may stare blankly or appear to be daydreaming. 

 

 Tonic clonic seizures – The most widely recognised type, causing a person to lose consciousness, fall and cause full body convulsions.

 

Each type of seizure requires a different response. Awareness and understanding are crucial. 


How to Support Someone Having a Seizure 

 

When someone has a seizure, they and their families need those around them to respond calmly and with patience and care. 

 

Here is how you can help.

 

Stay calm – your reassurance can help both the individual and those around them. 

 

Ensure safety – If possible, help them to the ground safely and cushion their head. Family members can’t always do this on their own so onlookers need to step in and help.

 

Give them space – Ensure they have somewhere quiet and safe for them to recover. A crowd of onlookers can make it more stressful for the individual and their families. 

 

Offer reassurance – When they regain awareness, gently let them know where they are and that you are there. 

 

Be patient – They may feel exhausted, disorientated, hot, clammy, or have a headache. Offering water and a quiet space can help. 

 

A person usually comes out of a seizure on their own and can carry on with their day after rest. If a person does not come out of a seizure after 5 minutes, an ambulance should be called.

 

Above all, understanding and patience are key. Stress is a common trigger for seizures, so creating a supportive, calm place is one of the best ways to help. 

 

Helpline numbers – 

 

Epilepsy society helpline – 01494 601 400

 

Action for carers 0303 040 1234

 

Written by Donna Chester MBACP

 

Donna Chester Counselling

 


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