Telling people about my epilepsy

Telling people about your epilepsy can feel hard. You might find you feel nervous, apprehensive or overwhelmed. You might have worries over people treating you differently or not understanding. It is OK to feel this way.

In the past I have been very selective over who I have shared my epilepsy diagnosis with, fearful of their reactions. I used to do my best to hide my diagnosis, particularly in times of better health.

However, it is important to remember that epilepsy is more common than it seems. Chances are there are plenty of people you have met in the past and plenty of people who you will meet in the future who also have epilepsy.

Despite this, few people talk about epilepsy because they are scared of the reaction from others. The way the media typically portrays epilepsy and the way that seizures are often joked about certainly doesn’t help this. There are also lots of misunderstandings about the different types of epilepsy. For example, people are often surprised to learn that not everybody with epilepsy is affected by flashing lights and seizures aren’t always convulsing on the floor.

Indeed, when I started to open up about my epilepsy with others, many of the people in my life said they knew very little about the condition. Helping these people to understand your epilepsy can help them to feel reassured and more confident about what to do if you have a seizure whilst you are with them. Ultimately, this can help you to keep safe.

All of the people I have spoken to about my epilepsy have said they are glad that I let them know. They have been there to listen and support me when things have felt tough. Through sharing my epilepsy, I also learned that somebody else in my life had epilepsy too! Talking to her became one of my greatest comforts growing up.

Whilst it can be difficult to share to begin with, talking to people about epilepsy can really help you to feel less alone. These are a few things which have helped me to start the conversation about epilepsy:

• Mentioning that you haven’t been feeling well recently (I have found this often prompts questions and can then lead into talking about epilepsy)
• Saying that there is something you would like to speak to them about when they have a moment (this helps to communicate that there is something personal which you want to talk about)
• Writing things down you would like to say if you are worried you might forget something
• If speaking face to face feels too overwhelming, having the conversation online can be a good alternative

If you do not feel comfortable talking to those close to you, remember there are also charities and support groups that are also there to listen (e.g. the Epilepsy Action helpline).

Over time, I have also come to realise that any negative reactions to epilepsy don’t usually come from a place of bad intentions, but instead a lack of education about the condition.

Remember that you can help to break down a lot of misunderstandings about epilepsy simply by being yourself and showing what you are capable of.