When you discover that someone you know or care about has epilepsy, you might not know how to respond or what to do.
As their friend and/or loved one, there are lots of ways you can be supportive, it’s really just a matter of understanding how this condition affects their lives.
What does having epilepsy mean?
As you may know, epilepsy is a condition primarily characterised by reoccurring seizures, sometimes referred to as ‘events’. That means a person with epilepsy likely experiences seizures on a regular or semi-regular basis. It’s important to understand that not everyone experiences this condition the same way.
Seizure experiences aren’t the same for everyone
Different people have different seizure experiences, and the frequency in which they occur can vary widely from person to person. The seizures may be obvious, involving sudden movement or loss of consciousness, but they can also be more subtle. Some seizures may last no more than a few seconds, with symptoms like twitching eyelids or briefly seeming to stare into space.
In addition, not all seizures are epileptic seizures, which is why until a diagnosis is made, they can sometimes be referred to as “events”. Events can be caused by a variety of circumstances including trauma, stress, sleep disorders, depression, and some forms of psychosis.
Managing the condition can be challenging
Though the seizures themselves are often manageable with medication, many people with epilepsy take caution and make significant adjustments to their daily living. This can lead to certain limitations, such as being unable to drive a car, perform certain tasks, or go to certain places.
Limitations aside, people with epilepsy are more than capable of doing most things anyone else can do. It should be noted that many people with epilepsy get along with day-to-day living without many limitations at all.
When it comes to supporting your friend or family member with epilepsy, remember that they’re not helpless. They can manage their condition, but that doesn’t mean they don’t need the same love, friendship, and support as always.
[Image description: A person is smiling and looking at another person who is grabbing their shoulder.]
How to show that you care
Don’t be a stranger
Some people may unconsciously put distance between themselves and a friend when learning that their friend has a serious condition. The truth is that your friend probably needs your support more than ever.
Regular correspondence, such as phone calls and text messages, can mean more than you realise. Just knowing that you still have people to talk to is immensely comforting in uncertain circumstances.
Get to know your friend’s condition
It’s also a good idea to ask questions about their condition and what you can or should do for them. Showing interest is very reassuring because it demonstrates your concern and shows that you’re willing to listen.
Throughout your relationship, remember that it’s almost always better to be calm and collected. Whether you’re witnessing a seizure or simply talking about their condition, most people with epilepsy prefer a gentle reaction rather than an overwhelming one. Support doesn’t mean you need to troubleshoot their problems or overcompensate for their symptoms.
Being treated with dignity, compassion, and love are what really makes a difference.
[Image description: A smiling person is sitting on the couch and holding a phone to their ear.]
What if something happens?
Being around during a seizure can be alarming, especially when someone you care about is exhibiting behaviour that is out of the ordinary. The good news is that the vast majority of seizures are not medical emergencies. In fact, people having seizures are more in danger of the surrounding environment than of the seizure itself.
Learning seizure first aid is a good place to start. Remember to remain calm, follow the instructions in the person’s seizure response plan (if they have one) and simply do your best to keep them safe where they are until their seizure stops.
[Blog] Seizure first aid — what to do when someone is having a seizure
In the unlikely event of a genuine medical emergency, then you absolutely should call 000 for an ambulance.
Call an ambulance if
- The seizure lasts longer than five (5) minutes or longer than is usual for this person
- They are having breathing difficulties
- They have been injured
- They are pregnant
- Another seizure starts without any gap between the two
- The person is unresponsive for more than five (5) minutes after the seizure is stopped
Listen, learn, and share
One of the most important things you can do for a friend with epilepsy is to learn as much as you can and share as much as you can.
Because epilepsy is so much more complex than most people realise, every little bit of understanding helps. For example, you may not know that people with epilepsy often develop mental health issues such as anxiety or depression. It’s the stigma that surrounds epilepsy, the way it affects a person’s relationships and social life, that often causes the most harm.
There’s so much we can all do to raise epilepsy awareness, end the stigma, and improve their quality of life.
Reading articles like these is a great first step, but there’s more that you can do. Share this article with friends and colleagues, encourage them to learn more, and let everyone know how to have a supportive and rewarding relationship with the people with epilepsy in their lives.
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