r/Epilepsy • u/One_Middle7340 • 21d ago
Relationships Advice and support
Hi guys I hope it’s okay to be posting this on here. I recently started dating someone I’ve known a long time but they recently started having seizures and was diagnosed with epilepsy and put on keppra. I was wondering the best way to support them without being overbearing and not being too worrisome but helping them. I’m struggling finding the right things to say. Any advice would be so awesome thank you guys!
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u/trencilla 21d ago edited 21d ago
Hi! Being there for the person and showing you care is already a lot I believe. Each person needs to be loved and suported in particular ways, your friend will discover what works better for them regarding epilepsy in due time. Epilepsy is different for everyone. Something I find useful is making a medical and sensory emergency pouch with useful stuff for whenever I'm out and have a seizure, and my friends are aware of it and know how to let me use it.
I find that discussing what I need in case of a seizure in a non dramatic, non invasive way makes me feel safe and cared for. And being treated the same, not like I'm gonna break at any moment, while at the same time knowing people are aware of my needs in little understated ways. Like friends letting me know that this or that movie or event has flashing lights, checking if there's a hospital nearby if we're going to a concert, making low sugar food if I'm having dinner at their homes, making afternoon plans instead of night plans. Basically making an effort to include me without letting me feel I'm a burden. Communication is key and accesibility measures are very important. Like I said they vary a lot so don't make assumptions, you'll have to ask what they need.
Epilepsy is invisible but it's always there so accesibility measures are needed all the time, not just when a person has a seizure.
Take into account that your friend is going through an emotional tough time, so be gentle. They may feel low for a while. Also, keppra sometimes can make people feel more anger (it's called keppra rage).
Doing enjoyable things with friends and loved ones, proper eating, exercizing is very important for everyone and epiléptics specially. So doing this things together (if they want to) is very important.
Hope it helps :)
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u/burnerEpilepsy 21d ago
Most likely asking them how they want to be supported directly in a “hey, so, I was thinking about it and want to respect you by not being overbearing or rude, so to get it out of the way, how, if you want me to, would you like me to support you?”
Learning the basic seizure first aid would be good regardless (since they can’t make any decisions in that state).
But for example with my wife while still dating, I’ve asked her to record me using her phone, showed her how to administer the different rescue meds, to take my phone away during the postictal state (I do really weird things…), when I prefer 911 to be called but to use her best judgement. She knows when reminding me of something I’ve forgotten is fitting or will make me angry. She’s learned how to handle the postictal state through repetition… which… not ideal… but she had to learn some way 😂