Epilepsy

Things To Never Do When Someone Tells You They Have Epilepsy

neverdoorsay

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

I didn’t hold anything against them. Of course not. 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 doing everything in their power to live as normally and healthy as possible. Meeting with family and friends in social situations.

It’s hard to know what to say or how to react to the news that someone you care about has a life-threatening medical condition with compassion. There really is no perfect handbook for this kind of situation, and I have 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 that’s it. This does not help.
  5. Don’t dismiss their epilepsy off as “No big deal.”
  6. Don’t ask if their condition came from something that 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 exactly 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, its a life-altering-condition. Epilepsy can in fact be life threatening. You don’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 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. It’s better off saying something rather than nothing.
  1. 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.
  2. Don’t do more for the the person than they are comfortable having others do. Being treated like child or invalid when they are not can be degrading. Independence is very important to a person.

All the reactions listed above, are ones that I have encountered at least once before. Yes, they have 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 is 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 that 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 is anything that I can do to help.”
  4. Offer interest in understanding what the person is going through. However, understand that 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 to connect to things outside of epilepsy. Find a way to bring happiness and joy into that persons 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. Try to steer clear of “Call me if you need anything.”
  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 is 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 that 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 is communication that is extremely helpful and that is what matters the most. That the lines of communication always remain open. It’s very helpful to be open and to 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 these lists as a learning opportunity to think about what might be helpful and how this can offer support. It is my hope to make the epilepsy journey a little less stressful and exhausting.

I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

8 Comments

  • Rebecca Duncan

    Thank you for sharing! I was diagnosed 16 years ago. I’ve had pretty much all types of seizures and overall my family has been supportive for which I am thankful but I know there are other people who don’t understand seizures and how to react and what to do.

  • Michele

    I’ve had seizures since I was 13. It’s because of a scar tissue I got on the brain when I was 2. My father and 1 sister were always very ashamed and embarrassed to be seen with me. My sister still is. I’ve just given up on her .I used to have 80 a year. Now I’m only having 12-15 yearly. Just because I don’t let these things get the nerves and stress worked up. As a matter of fact, I can even joke about the seizures now. Just figure if people don’t want to be friends with you when they find out about your seizures, it’s their problem NOT yours. I used to think I was the bad one until I spoke to a social worker and realized they were making me feel this way. You’ve got to realize the seizures don’t make you any “lower” than you were before you had them. If you can work and have special hobbies, show them. I’m glad I can now. I’m in the 60’s now, working, and if anyone walks away when I have a seizure, I just figure that’s their problem!

  • Tina Lewery

    I was diagnosed at the age of 14/15 just after we had been told that my older sister who had drowned in a bath while having a seizure after childbirth .I think it may have been this bad ,life changing thing that may have brought on my first seizure.After celebrating our Ruby Wedding anniversary together myself and my husband have been gifted with a beautiful,healthy fifth grandchild .I have a beautiful Grandaughter who is about to celebrate her 18th Birthday .Thank You for your story x

  • Leanne

    Brilliant read this just wish my first husband could have seen it back then, I’ve been epileptic for 19 years after a bad car crash, my fits was not to bad for a few years then all of a sudden they got worse my husband walked out as he could not cope, I moved on met someone new it was great he knew about my epilepsy, until this year when I had to have surgery on my head, so here we go again he walked out of my life as he could not cope, I’ve now shared this on Facebook and Twitter and hope the 2 selfish men that walked out of my life try to understand just a little,x to all you epileptics out there I send big hugs and best wishes,xx

  • LINDSEY WILLIAMS

    I really appreciated this article! Unfortunately someone that I was really close to and have known her since 5th grade, we are now in our early 30’s turned her back on me! I don’t talk to her, see her or anything like that! So the article helped alot

  • Margaret A. Henderson

    This article written in reference to Epilepsy is much welcomed. Tiffany Kairos has provided an excellent guide for well-intentioned family members and friends, of those diagnosed with epilepsy. Indeed, meeting this challenge with informed enlightenment; especially from a place of acceptance and enduring love, will enhance the lives of all. It conveys a sense of hope. Thank you for sharing this meaningful post.

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