7 Ways to Support a Friend with Epilepsy
Throughout our lives, we are likely to have a friend who is diagnosed with a chronic illness. Sometimes we know exactly what to do, other times we’re clueless.
There are two types of illness that are prevalent in this world: those that don’t take very long to recover from (such as a cold or the flu) and those that are lifelong (such as epilepsy). There is no guide on how to prepare for such a traumatic experience. No instruction manual on how to handle these long-term illnesses or disabilities. Nor do we really understand what we can do to support those who have one.
So, how exactly do you show up for a friend during this tough time? If you want to support a friend but aren’t really sure how, here are seven meaningful suggestions:
Study up on the condition.
I sometimes find it therapeutic to talk about my chronic illness. But that isn’t always easy when the person you’re with has no idea what you’re talking about.
Devote a little time to research the condition. You don’t have to be an expert, but knowing the basics will give you a better understanding about what life is like for your friend.
For example, if there are certain aspects that could trigger a seizure, read up on situations and circumstances to avoid. That way you can suggest activities and events with options for them the next time you go out together.
Of course, it never hurts to double-check if you’re unsure about limitations or the decisions you’re making.
It’s a thoughtful gesture that shows you care.
Learn about seizure first aid | Get a seizure first aid print-out
Offer Specific Help.
Even after over a decade of life with epilepsy, I still on occasion struggle with asking or receiving help from others. Battling the desire for independence and shaking off the feelings of not wanting to be a burden.
Someone with a chronic illness may not know how to respond to, “What can I do to help?” Or the person may feel uncomfortable or shy to ask a favor. Instead, take the initiative and make specific offers such as:
- Would you like me to vacuum?
- Would you like me to make you some meals for your freezer?
- I’m going to the store. Is there anything I can pick up for you?
- Would you like me to call or text to check in? (Emphasize that you’ll understand if they can’t answer the phone or reply to the text.)
Practice the art of active listening instead of immediately offering advice.
Having someone to listen to can be really helpful. Aside from the seizures themselves, epilepsy can be stressful, isolating and cause depression, so having someone to talk to about everything can be comforting.
Be a sounding board and not a problem-solver. Listen with empathy, show interest by asking questions, and let them know that they always have someone to turn to if they want to talk.
For instance, sometimes I appreciate having an outlet to vent about how frustrating it is having to stay in bed resting following a seizure when I really want to be up and about.
Visit when possible
Being chronically ill can feel lonely, but it can equally feel overwhelming. If you’d like to visit your friend, call and ask when a good time might be. Keep in mind that things can change in an instant, so be flexible if your friend needs to cancel or reschedule. Try to plan your visit for a time when it may not be busy, such as weekends or holidays. In fact, these not-so-busy times may be when your friend could really use your company.
I don’t get out as much as I would like because I retired from driving directly after my diagnosis. Being an extrovert, I do at times experience that feeling of isolation and enjoy socializing with others. Visits from family and friends are always a real treat.
Don’t offer treatment advice
You’ve recently read an article that specified (insert treatment here) and this person is no longer experiencing symptoms and life went back to normal. That’s great to hear! If you have questions about our treatment plan, you’re welcome to ask but suggesting other treatments is just not appropriate. We understand it’s coming from a good place but those of us living with a chronic illness are aware of our seizures and how to manage them.
Talk about something besides our illness
We eat, sleep and breathe our illness. Sometimes it is just nice to talk about something else. It’s a refreshing change and an instant mood booster.
I battle complex partial seizures every day, multiple times a day and though I’ve gotten used to it, that doesn’t mean I don’t get frustrated or annoyed from time to time. When I catch a break from my seizures I don’t hesitate to use that time period to do something completely unrelated to epilepsy or seizures in order to grasp that sliver of normality.
Whether it be a conversation about a funny TikTok video we recently saw or something we could do together over the weekend, it’s a mini-vacation to me.
Take Care of Yourself
Sometimes, we get so swept up in helping others, we can forget our own needs. You can’t pour from an empty cup! You need to take care of yourself so you can do the best for your friend who is living with a chronic illness.
Be sure to recharge your own batteries while being there for your friend. It’s okay to have healthy boundaries.
Every day is a struggle for those living with a chronic illness, so having a strong support system can be a great encouragement given all we have to face.
Having dependable people around me has made a significant difference to the way I manage and view my epilepsy.
Do you know of any other suggestions that might work too?
Unfortunately my parents do the opposite. They want to talk over me, give stories about people having this kind of treatment or finding a new doctor. I also live with my father and stepmother. Friends have been very conscious of my epilepsy so I’m very fortunate for them. It’s hard when it’s your parents that you live with. This article really spoke to me and it will be a great resource in the future