In a recent survey conducted by Epilepsy Scotland many people with epilepsy shared that, as students, they sometimes felt their peers had a lack of understanding about epilepsy and what having the condition actually meant for them.
When someone chooses to disclose their epilepsy to you, it can be quite daunting and personal. It is important you respond kindly and offer support to them when they need it as it can be a huge help to them.
“My friends accepted and embraced me for being me”
A Edinburgh Napier University graduate with epilepsy
Here are some points to keep in mind when discussing epilepsy and being around your friend or peer with epilepsy.
Listen and respect
When discussing a person’s epilepsy, you should listen to what they have to say and what their specific needs are. This may be that they cannot drink in social situations or have memory issues which may mean they forget plans.
Try and accommodate these needs when spending time with this person as some students with epilepsy can feel isolated from their peers as they may not be able to attend certain social events or feel alienated by the drinking culture common amongst students.
You should be aware of the stigma around epilepsy. People with epilepsy may be uncomfortable and reluctant to open up to others about their condition because of the lack of understanding about epilepsy.
People with epilepsy are usually offered academic support which can include funding or special arrangements during exams.
Epilepsy Scotland’s student survey revealed some students felt uncomfortable about sharing their epilepsy and the academic support they received with others as they had previously been accused of ‘being lazy’.
You should take the time to understand how the condition affects your peer, understand academic support may be something they require and encourage them to take any support if offered.
Research
Researching a health condition such as epilepsy can be helpful if you do not really understand it and you want to do more to support your peers.
However, you should ensure you use accredited resources such as the ones found on the Epilepsy Scotland website as there is a lot of misinformation about epilepsy.
You should also remember the person who has epilepsy understands their own epilepsy better than anyone else, everyone’s epilepsy is unique to them and so you will not become an expert with the information online.
That is why you should never give medical advice to your peer, nor should you scare yourself or them with facts you have stumbled upon.
If your peer is looking for advice, suggest they contact their Epilepsy Specialist Nurse or contact Epilepsy Scotland’s free and confidential helpline.
Symptoms
Epilepsy is not just seizures. It can cause a range of symptoms including brain fog, memory loss, and anxiety.
If your peer discloses these to you, you can learn more in Epilepsy Scotland’s guides which explain these in more detail.
It is good to try and understand these symptoms and the effects they can have on a person’s day-to-day life.
If your peer has active seizures, they may tell you what type of seizures they have and how to react to them if they have one in front of you.
Epilepsy Scotland also has guides explaining seizures and first aid. The most important thing to remember is to keep calm. If you are feeling anxious about this, reach out to Epilepsy Scotland’s helpline.
Recovery after a seizure can be lengthy and tiring. During this time, it can be helpful to be as supportive as possible, maybe by offering to pass on notes from classes or even just keeping them company.
Speak out
Epilepsy is a complex condition and if you have any concerns about your peer’s behaviour, health or you just feel overwhelmed with the support you are giving, Epilepsy Scotland is a good place to turn to. Our helpline service is free and confidential, and you can call, email, or message on Facebook.
A webinar targeted towards students explaining epilepsy is also available to sign up to here.
