Epilepsy

Why I Am Open About My Epilepsy

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There is still to this day such a stigma attached to the condition of epilepsy. It is viewed at as a literal disease by some. Something that you can catch if you come in physical contact with the person who has the condition. It is frightening by those who have never witnessed a seizure before. Certainly many thoughts could be running through their minds. “Are they dying? Are they possessed? Should I help? Should I stay away? What do I do? What’s happening to them? What is that?”

I remember when I had just been diagnosed with epilepsy. Though I had the support of family all around, I felt so alone. I didn’t feel as though anyone knew or truly understood how I was feeling.

My mindset, my thinking needed to change. My heart swelled with ambition to learn all that I could about the condition that I lived with as well as educating those around me. The support I received was a God-sent.

I soon learned along my journey, just how many people around the world lived with epilepsy. Which propelled me with even more ambition to learn all that I could about the condition. Not only to learn but to educate and advocate. It became a mission. An estimated 65 million people worldwide live with epilepsy. If we continue to remain silent, allow stigma’s walls to stand, no good will ever come forth.

Epilepsy takes the lives of far too many men, women and children. Far too often I hear or read another story about the passing away of a young child, man or woman at the hands of a seizure.

Along my journey, I’ve chosen to be open about my life with epilepsy. I do not keep it hidden or quiet.

These are 5 reasons why:

1.) Eliminates Remorse.
I’ve lived with epilepsy for seven years. In the beginning, I masked each and every emotion that I felt to the best of my ability from family and friends. This only shred me to pieces inside and confused family, friends and the public all the more about what was happening with me. Continuing this pattern only stirred the downward spiral even more. By speaking out, sharing my story, the power is taken away from epilepsy, and I am able to become a much stronger person.

2.) Shatters Stigma.
From the moment I was diagnosed until now, I took notice of just how much stigma surrounds the condition of epilepsy. Yes, certainly it was terribly worse in years past but stigma still clings on to the condition for dear life even now. Some still believe that epilepsy is contagious. Contractible by coming in contact with a person who has the condition. Not true. Some still believe that it is correct to place an object in the mouth of a person who is having a seizure which is absolutely incorrect. Some who see a person having a seizure simply stay silent and do nothing to help. They simply walk away or watch. I personally have had this happen to me on more than one occasion. Some living with epilepsy are timid to want to speak up about their life with epilepsy. Embarrassed or perhaps fearful of the repercussions. Will they lose their job? Boyfriend? Girlfriend? Friends? Will they be perceived differently? All of us as family, friends, caregivers, whatever our role is, it is important to let it be known that arms are open. They will always be open.

3.) It Helps Others.
I didn’t know that speaking about my journey with epilepsy would inspire others. I wasn’t sure if anyone would want to hear what I would have to say on the matter. When I began to open up about my life with epilepsy, I began connecting with new and amazing people from all walks of life, with similar journeys and with differing journeys. I allowed myself to be vulnerable, and astonishingly it felt great. By allowing myself to be open and honest about my journey with epilepsy, I can see it helping others which is a tremendous blessing.

4.) No More Silence.
Silence can sometimes be a beautiful thing. Other times, silence can be so loud, it’s deafening. I remained silent about my epilepsy for a good while in the beginning. I didn’t want to talk about it with anyone. Not family, not friends. If I felt anything strange in public, I immediately got somewhere private. If it were medication time, I took medication alone. Should anyone ask how I were doing, it was typically a one word response. “Fine. Good. Okay.” What a terrible cycle this was to be caught in, I soon realized. This wasn’t benefiting me any or making things any better. It was time for a change. I couldn’t remain silent any longer. With that, I do my best to no longer carry along any sadness, or frustration with having epilepsy.

5.) Genuine Relationships With Others.
Relationships are incredibly important. Since becoming diagnosed with epilepsy, our entire family has become stronger than it has ever been. Spending more time together one-on-one, reminding one another that we love one another, reflecting on good memories and more. Amazing how a medical condition can bring things into perspective. The importance of family. The importance of life. The reminder of how fleeting time can be, so use the time that you have wisely.

Have you become more open about your epilepsy? How has doing so benefited your journey? Share in the comment section below!

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!

4 Comments

  • Lainie Chait

    Hi I just found you on twitter an yes…..I have recently become so much more open about my epilepsy. So much so I wrote an autobiography and am planning to have the launch in November this year. I am crowdfunding at the moment so it is out on FB and twitter and so there’s no hiding it any more. Have a look at the campaign…I’m really excited to get on the bandwagon and start to educate people now that I’m not afraid to be seen and be vulnerable.
    Tiffany….meet ELECTRO GIRL

    https://www.kickstarter.com/projects/electrogirl/electro-girl-raising-awareness-to-remove-fear-of-e

    Hope to stay in contact. This article is great!!

  • Alison Zetterquist

    Terrific article, Tiffany! These days, my raison d’etre seems to be persuading people with epilepsy who have been in hiding to venture out. To me, most critical is that they do so confidently and with no apologies. Not only will the way they behave affect their feelings about themselves, but, as you say, it will reflect on all of us with epilepsy, confounding the stigma and helping others literally see epilepsy in a new light.

  • Carla

    Tiffany, I talked to you lots of times, I love what you have done for all of us people with epilepsy, you are a great inspire to me and to all, It was you that made me open up and tell others about mine, I suffered over 50 years afraid to say a word, I owe it all to you. Thanks so much for making me feel like a whole person again not having to hide behind closed doors. Love you sweetie. Keep in contact…

    • Tiffany Kairos

      Hi Carla –
      What an honor it is to know that I’ve been able to do this for you. 🙂 It took me a while in the beginning of my journey before I found the courage and to want to open up about my condition. I decided I no longer wanted to let it have control over my life. You are a beautiful person and you definitely don’t have to hide. 🙂 I commend you for battling and refusing to give up.

      Sending you much love!

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