18 Things to Do (and Not Do) When Someone Tells You They Have Epilepsy

I remember the first time someone spoke the words, “Everything will be OK!” speaking about my epilepsy. Fire engulfed my stomach. I knew this family member meant well, but I wanted to curl into a ball and cry until I had no strength left in me. It didn’t look OK in that moment.

Of course, I didn’t hold anything against them. They meant well. Men, women and children are being diagnosed with epilepsy in the United States every single day and around the world. Medicines and treatments are being created all the time. Those battling epilepsy are doing everything in their power to live as normally as possible. 

Other relevant stories:
• What to Do When Someone Has a Seizure
• Can a Woman with Epilepsy Have a Baby
• Medications for Epilepsy 

It’s hard to know what to say or how to react with compassion to news that someone you care about has a life-threatening medical condition. There really is no perfect handbook for this kind of situation, and I’ve experienced quite a few blunders.

Below, I’ve put together my list of Things To Never Do or Say When Someone Tells You They Have Epilepsy:

1. Don’t raise an eyebrow and ask, “Is it contagious?”
2. Don’t all of a sudden stop answering calls and texts.
3. Don’t start whispering or lowering your voice to ask any questions you may have about epilepsy.
4. Don’t say “That’s sad!” and nothing else. This does not help.
5. Don’t dismiss epilepsy as “No big deal.”
6. Don’t ask if the condition came from something the person did. 
7. Don’t say, “I know how you feel.” Unless you’ve been treated for the same type of condition and have undergone the same treatment, you really don’t know how the person feels.
8. Don’t say “Just be grateful you don’t have (Insert another medical condition).” No matter what medical condition you have, it’s most likely a life-altering-condition. Epilepsy can in fact be life-threatening. A person doesn’t need to be reminded that things can always be worse. Comparing medical conditions is not helpful.
9. Don’t say nothing. When a friend reaches out, it makes the person with epilepsy feel wanted and needed. A lot of people are afraid and don’t know what to say, but simply not saying anything can make a person feel isolated and alone. 
10. Don’t treat the person any differently. Treat them just as you’ve always known them your entire relationship. They will notice a difference. They want to be treated with the same amount of respect, dignity and compassion. Just because a medical condition has entered the picture doesn’t mean an alteration of relationship needs to occur.
11. Don’t do more for the the person than they’re comfortable with. Being treated like a child can be degrading. Independence is still important.

All the reactions listed above are ones that I’ve encountered at least once before. Yes, they’ve knocked me back a step or two, even hurt me a little. Over time though I’ve grown a thicker skin and even allowed myself to smile and laugh a bit on the inside.

Thankfully, for each of these responses, there’s a greater or an even more powerful response. Take a look at my tips for What To Do When Someone Reveals They Have Epilepsy:

1. Tell them, “I’m not sure what to say, but I want you to know I care.”
2. Assure them, “If you would like to talk about it, I’m here.”
3. Assure them, “Please let me know if there’s anything that I can do to help.”
4. Offer interest in understanding what the person is going through. However, understand the person may not want to talk about it right away.
5. Bring humor into the picture if it appears to be the right moment for it. Humor can change moods and even lighten the load. This can help the person and even the family connect to things outside of epilepsy. Find a way to bring happiness and joy into that person’s life.
6. Offer to help them with things they may need such as running errands, going to the doctor, preparing a meal, picking up prescriptions, etc. Be as specific as possible.
7. Allow there to be room for normal non-epilepsy talk in a day. Sometimes a person can feel as though their entire lives are consumed by their condition. When that’s the case, it feels great to have distraction. Take notice from the person how much they do and do not want to talk about epilepsy.

Epilepsy fighters, family and friends are all in the journey together. We who are diagnosed know family and friends have the best intentions. Words don’t always come out like one might hope when stress, fear, worry, all kinds of emotions are running rampant. However, it’s communication that’s extremely helpful and that’s what matters the most — that the lines of communication always remain open. It’s helpful to be open and communicate that you would like to be there and you want to do what you can to help.

I encourage epilepsy fighters, family and friends to take a look at both of the lists together and use them as a learning opportunity to think about what might be helpful and how this can be used to offer support. It’s my hope to make the epilepsy journey a little less stressful and exhausting.

Follow this journey on The Epilepsy Journey.