Epilepsy

When I Feel Embarrassed After A Seizure

In the almost ten years that I’ve lived with epilepsy, I have experienced thousands of seizures. Seizures in the comfort of my own home with my husband to protect me, seizures all alone with no way to cry out for help praying that when I wake, praying that I do wake, that I hadn’t injured myself in any way. Seizures at the grocery store, at the gym, during holiday gatherings and special events visiting family.

Dazed and confused, attempting to regain my bearings and my sight as vision is still a blurry smeared mess, I am able to make out the dead silence that surrounds me or muffled whispers among one another. Choosing to stand at least ten feet away from me, staring at me like I might explode or do something inhuman. I gather that those who aren’t used to witnessing someone having a seizure or who have never witnessed a seizure at all, are either extremely curious (we’re human, we’re curious by nature), terrified that a person is having this sort of reaction, or eager to want to help in any way that they can, unfazed.

Once a seizure has subsided, a feeling washes over me like a chilling heavy rainfall, not always, but on occasion. The feeling of embarrassment. Flashbacks of frightened faces, wide eyes as big as golf balls, feeling like a science project being studied as I sit up and the tears stream down my cheeks soon after, wanting more than anything to not be asked “Are you okay?” at minimum twenty times in a day, more if visiting family or in public. Wanting so bad to say, “Don’t be frightened. See me as I am. Not just my condition.”

I came to realize that this feeling of embarrassment, is a common symptom following a seizure. Rather than being swallowed up by the emotion of embarrassment following a seizure, I decided that it was a perfect opportunity to speak up and speak out about my personal journey with epilepsy and epilepsy as a whole. To let people know that, rather than giving up on living a full and productive life, I give my all to live a happy and healthy life despite having epilepsy. If I get knocked down, I get right back up and continue on.

In this way, it plants seeds of education, advocacy, compassion and strips away any stigmas and fears they may have. In addition, it empowers me to recognize the moments in which I feel embarrassed following a seizure and replace it with strength.

Having a seizure is nothing to be embarrassed about. Each of us have a battle we face. It’s how we face it that shapes and defines us.

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!

10 Comments

  • Kylie Langhorn

    Your story is spot on. My 17year old son has recently been diagnosed with Epilepsy and I feel for him after each seizure he has. Thanks for your insight.

  • Bertha Snodgrass

    Several of my friends/family have epilepsy; my heart goes out to you. God bless you and give you peace.

  • Joshua bybee

    Oh, I have come so far with them now that I just have fun with them. When I tell people with epilepsy this they definitely don’t understand. But I love logic puzzles such as the Rubik’s cube, and with my seizures I get no aura, so don’t know one is coming, then have to figure out I had one, because there have been plenty of times in public that I don’t even know where I am after or what happened because I have just wandered so far away and then sometimes even taken a nap in public, but like I said I like having to figure things out, and that is what I have to do, figure out what happened and where I am so I can get myself home. Definitely interesting for me to have an hour of missing time sometimes. And definitely even more ways that that I have found the positive in my epilepsy. So I am glad to hear that you are finding ways to not be embarrassed, because there is no need to be, you did nothing wrong, and it sounds like you have a husband who loves you regardless of how many seizures you will have in your life.

  • Phyllis Higgins

    My son Sean is 22 and has had epilepsy for 7 years after a bought of viral meningitis and encephalitis. He has had numerous med changes/brain surgery and continues to suffer not only from seizures but the side effects of meds. He is currently adding charlottes oil to his regime and while it helps with the severity he still has weekly episodes of activity. He tends to self isolate-any ideas? Thanks for the blog-I sent it to him and hope he reads it. It’s good to know others are out there dealing with similar issues.

    • Emily

      I have had seizures since an accident in 9th grade, and am the same age as your son. What bothers and embarasses me (and many of us) is a lack of control. We feel powerless and as if our strength is taken away from us. I’m sure your son is feeling that. It’s hard. It can be angering and can lead to depression and sadness. I’ve had friends who are great with it, and others who aren’t. A really good therapist and psychiatrist can do wonders. It has for me. There are even free ones that you can text. The numbers are online. But just be there for him, but don’t baby him. Let him know that he is still strong, and still has the ability to do what he puts his mind to. The ADRC in your area, as well as community colleges, are great areas to start. 🙂

  • Bonnie

    Well said! We need more of us to speak out and educate so people will understand. Personally I have gone through seizures from grand mal to peti mal. Thankfully since menopause the big ones are gone. I carry a card that I can hand someone that briefly tells them what is happening because I don’t understand and can’t speak or write. It is embarrassing but I find people respond favorably when educated. Best wishes with you journey! ❤️

  • Robert Poloha

    I’m looking forward to meeting you! I think we might be able to understand each other – I have had the epilepsy since birth! On my 3rd VNS and changing onto my 16th medication! Yes – fighting the battle changes every time the situation changes! That has happened so often! If you will be at Disneyland – looking forward to meeting you there in November!

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