How Do You Provide Support for a Friend With Epilepsy?

It may have tak­en years for them to tell you. They may have told you the day you met. Or maybe, they were diag­nosed after you were already friends. No mat­ter when or how you found out, you’ve learned that your friend has epilepsy. 

Now what?

Epilep­sy (also known as a seizure dis­or­der”) is a con­di­tion where you have recur­ring seizures — sud­den, short bursts of elec­tri­cal activ­i­ty in your brain. It’s the fourth most com­mon neu­ro­log­i­cal dis­or­der world­wide and can affect any­one at any age. Yet despite how com­mon it is, it’s often misunderstood. 

If you have a friend with epilep­sy, you may be con­fused about the con­di­tion or unsure how to help them. That’s per­fect­ly nor­mal — but for­tu­nate­ly, there are many ways to pro­vide sup­port for some­one with epilepsy. 

Here are some of the dos” and don’ts” to keep in mind if you have a friend with a seizure disorder: 

Do: Learn about epilepsy. 

While you cer­tain­ly don’t need to become an expert, it’s a good idea to brush up on your epilep­sy basics. Hav­ing some seizure knowl­edge under your belt can help you bet­ter under­stand what your friend is going through and be pre­pared if they have a seizure in front of you. It will also show your friend how much you care, and reas­sure them that they will be safe if they have a seizure around you. 

Before hit­ting the books, find out what type of epilep­sy and seizures your friend has, since there are many types. 

Also, don’t be afraid to ask your friend ques­tions so you can learn more about their per­son­al expe­ri­ence with epilep­sy. Find out what trig­gers their seizures, such as flash­ing lights, stress, ill­ness, or lack of sleep. Just make sure that your friend is com­fort­able with talk­ing about it. Let them know that you can stop ask­ing and that they don’t have to answer any­thing they don’t want to. 

Do Not: Play the role of doctor. 

As you study up, you might start read­ing about dif­fer­ent types of treat­ment, or come across chat forums where peo­ple dis­cuss how they con­trol seizures. 

Avoid say­ing things like, You should try this,” or Why don’t you use that?” As well-inten­tioned as you may be, the best med­ical advice your friend can get is from their own health­care provider. It can also come off as pushy or even insen­si­tive, even though you’re try­ing to help. 

Also read: Good­bye Dr. Google and Self-Diag­no­sis: 5 Pit­falls of Act­ing Like Your Own Doc­tor

Do: Come up with a seizure plan. 

Whether your friend has seizures reg­u­lar­ly or can’t remem­ber the last time they had one, make a plan for what to do if a seizure does occur. 

Learn­ing seizure first aid is one of the most impor­tant parts of mak­ing a seizure plan. 

If your friend has a ton­ic-clonic seizure (the type that most peo­ple think of when they think of seizures, where a per­son falls and con­vuls­es), fol­low these steps: 

  • Stay calm and keep oth­ers calm 
  • Time the seizure 
  • Gen­tly help them lay down and roll them onto their side 
  • Put some­thing soft under their head and neck 
  • Loosen tight cloth­ing (e.g., undo top shirt but­tons, remove tight neck chains) 
  • Keep their head away from hard or sharp objects and corners 
  • Do not try to restrain them or hold them down 
  • Nev­er put any­thing in their mouth — it is a myth that a per­son hav­ing a seizure can swal­low their tongue. 
  • Don’t give them food, drinks, or pills until they are ful­ly awake and aware 
  • When they wake up, stay with them until they are com­plete­ly alert 

Resource: Learn about first aid for oth­er types of seizures.

The seizure plan should also include emer­gency con­tact infor­ma­tion and a list of their cur­rent medications. 

Not all seizures require emer­gency care, but there are cer­tain times when you should call 9−1−1 for a friend hav­ing a seizure. 

Do Not: Pan­ic if they have a seizure. 

Watch­ing some­one have a seizure can be scary, espe­cial­ly because a seizure can become life-threat­en­ing. How­ev­er, most aren’t as seri­ous as they appear. And if your friend had a seizure where they lost con­scious­ness or their con­scious­ness is impaired, they might not even remem­ber it after. It’s often much scari­er for the per­son watch­ing the seizure than the per­son hav­ing one. 

If your friend is look­ing for a spe­cial­ist to treat their epilep­sy, rec­om­mend that they sched­ule an appoint­ment with a Duly Health and Care neu­rol­o­gist.

Also read: Duly Health and Care Doc­tors Named Top Brain Doc­tors: 2022’ by Chica­go Mag­a­zine

Do: Offer your support. 

Hav­ing epilep­sy can take a toll on someone’s men­tal health, even if they have their seizures under con­trol or they seem to be okay on the out­side. Let your friend know that you’re there if they ever want to talk about it. 

If they have a seizure and can no longer dri­ve for a while (many states require being seizure-free for a cer­tain amount of time), offer to run errands or dri­ve them to appointments. 

Even if they don’t take you up on it, it will mean a lot to them to know that they can count on you. 

Do Not: Treat them any dif­fer­ent­ly than you would treat any­one else. 

There’s a dif­fer­ence between accom­mo­dat­ing your friend and alien­at­ing them. 

It’s impor­tant to be mind­ful of their epilep­sy when mak­ing plans. If you know that lack of sleep is a seizure trig­ger, you may not want to invite them to a mid­night movie pre­mier. If their med­ica­tion caus­es drowsi­ness, don’t take it per­son­al­ly if they some­times have to pass on plans in favor of a nap. 

But when it comes to how you treat them as a per­son, be care­ful not to walk on eggshells, tease them about epilep­sy, or make them feel guilty about not being able to do cer­tain things. Give them the same respect that you would give your oth­er friends. 

They might not say it, but they will notice — and it can make a world of difference. 

  • We all come from different walks of life, with experiences and stories that make us all unique. I am lucky that I work in a field that allows to me to be able to spend time with each one of my patients, allowing me to listen to their stories in order to gain a greater understanding of their condition so that I am able to provide the help and support they need to recover.