Supporting Someone With Epilepsy

When you find out someone you love has epilepsy it can be hard to know how to react. You may be wondering what this means and if things are going to be different now? Will this be a buzzkill and kill your relationship? Does this mean there is a whole bunch of stuff they can’t do now? What do you do if they have a seizure while you’re hanging out? It is my hope to help you support your loved one in a way that is actually helpful and beneficial to both of you. Here are my top tips for supporting the epileptic in your life.

Tip 1: Get Educated

First thing you need to be aware of is that there is a ton of false information out there about Epilepsy. I have had someone tell me I was possessed by a demon instead of accepting that this is a neurological disorder. Some people believe that it can be cured or that most epileptics are simply faking it. I even came across a YouTube video by a young girl who was instructing people how to tell if a seizure is fake. Her presumption was that all seizures have to fit in her bubble if it didn’t it must be fake. She encouraged people to do dangerous things like smacking them, pinching them, poking them in the eye. All things that could seriously injure someone having a seizure. 

There are a great many wonderful sites to educate yourself with. The Epilepsy Foundation is one of them.  My site has a post about the different kinds of seizures and gives you video examples of what they look like.  Check it out here. You can ask a doctor about it, but your best source for information about your loved one’s epilepsy is them. Even if it is a new diagnosis and they are still learning themselves you can still ask them about it and ask what you should do if they have a seizure. Some epileptics have emergency meds and some won’t. Each has their own action plan on what to do and it is important you listen to them. You may even decide you want to learn about this together and that is a great way to be supportive. Especially if they learn about something upsetting or scary. You could be the one they lean on if you are willing to cast away all preconceived notions about epilepsy and getting the actual facts. 

Tip 2: Don’t Crush Their Dreams

Once someone is diagnosed with epilepsy all of a sudden the world turns into a world full of things you can’t do.  It can be hard to watch your friends to do everyday things you once or wanted to enjoy but can’t now. I remember how frustrating and disappointing it was to watch all my friends get their driver’s license when age wise I should have been the first. What’s worse loved ones will often forbid you from doing things you know deep down you can do. 

Here’s the thing, while yes, the risk of having seizures can make things like sports riskier or swimming at the beach. The problem with forbidding things like this is that it can feel like you aren’t allowed to have fun anymore. I have watched testimonies of epileptics to afraid to make pasta because they might fall while going to pour the hot water into the sink. With or without epilepsy the world is dangerous. Sports are still risky without epilepsy. Cooking can also be dangerous without seizures. In fact, everything can be dangerous. The possibility of death and danger surround us every day. 

You can let that fear control you and destroy your loved one’s dreams and spirit or you can make safety plans that allow them to enjoy life without taking away all the fun.  I cannot tell you how heartbreaking and soul-crushing it is to hear no all the time.  Hearing no or the what if’s constantly will eventually break the one you love and they will give up trying. Don’t let that happen! 

Tip 3: Be Willing To Stand Up For Them

It really is heartbreaking how much ignorance there is on this subject.  It can be exhausting for your loved one to handle all that ignorance at once. Many people think it’s perfectly fine to crack cruel jokes about epilepsy not realizing how bad it can be. Others will insist it’s no big deal and try to minimize what they are going through by talking about their own problem. Many lose jobs over this. Many are constantly teased and bullied over this as well. 

It can get to you if feel like you are handling it alone. Be willing to stand up for them. I have a good friend that once stood up for me when someone was trying to belittle my epilepsy on a bad medication day. I didn’t have the energy or the confidence at the time to do so and she was literally like a superhero to me when she spoke up and stood up for me. Be that hero to your loved one. 

Tip 4: Recovery From Seizures Can Take Time

I am part of an online epilepsy support group. I cannot tell you how many times I have heard frustrated epileptics needing to vent in a safe place because their spouse, parent, or whoever they are living with is tired of them taking so long to recover from their seizures. 

While it is true there are some people with epilepsy that don’t need much recovery time, but there are many others like myself who need a few days to recover. A seizure can be very exhausting. A Tonic-Clonic will knock me out for a couple of days and sore for several days. Even partial seizures take their toll on me. For me, it’s like running several marathons back to back without rest. My body needs time to recover and that often means tons of sleep and maybe a day or two of hobbling.  

While it might be helpful if they recovered quicker it really is out of their control. Instead, give them the time they need to rest. If they have allowed you permission to talk to their neurologist with that handy HIPAA form then save them some work and call the doctor to update them and see if any tests or appointment needs to be made.  

Tip 5: Be aware that Medication Can Suck

Sometimes the effects of the medication a person needs to take are worse than the seizures themselves. I have had medications that made my hair fall out in clumps. I have medication that impaired my ability to learn and speak the way I normally would. I have medication cause my hands to constantly tremble. I have had medication make it difficult to walk and see straight. I have experienced double even triple vision and what’s worse is that many medications can cause mood problems. 

For example, the medication I take now can cause depression, but on the other hand, it keeps me seizure free. I made the choice to deal with the depression rather than worrying about a seizure every day. I have found my depression to be easier to deal with than my epilepsy. Not that depression is easy by any means but in my case, it’s the better choice. 

So you may have some rocky times with them as they try and find a medication. They may reach a point where they are deemed medication resistant and then they’ll look at options like nerve stimulators, brain surgery, and even dietary options. It takes patience and a great deal of grace on your part as they continue on their journey for control and answers. 

I hope this article has been of help. If you want to show your support for your loved one in a visual and stylish way check out the epilepsy awareness swag shop on the menu up top. Have any questions? Just leave a comment and I’ll do my best to answer you or write an article about it. Epilepsy-related content is posted each Saturday!