Epilepsy

You Don’t Look Like You Have Epilepsy

“Not every condition is always visible.”

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I live with Epilepsy. I have lived with this condition for going on 7 years this December. I was diagnosed with this condition in 2008. Four short months after marrying my husband, days before both of our birthdays, and 2 weeks before Christmas. I had one previous seizure at the age of 16 yet no other seizures than that one single seizure. They had come back full force. I had to make a big change in my life. I had to rediscover a new kind of normal. I had to get comfortable with taking medications every single day at a specific time. I took time off of work to recover, then went back to work but soon discovered that I needed to take more time off of work to recover and readjust to medication and life with epilepsy. Medications in the very beginning most certainly dragged me around and beat me down with the side effects.

Most people might take into assumption that because I look happy and healthy that there’s absolutely nothing wrong. Here’s the thing. For the most part, I am completely happy and healthy except for that one minuscule problem. That bump in the road. Epilepsy. When it’s not causing me seizures, auras, when the medication side effects aren’t awful and frustrating, life is amazing. I love to grab hold of the best aspects of life by the hand and live it because I’m so thankful to be alive right now and I want to do everything in my power to treat my body right. Even when the storms of life are happening, I do my best to keep a positive perspective.

The most challenging moments of living with epilepsy are when I run into moments when I’m doing so well and I hit a bump in the road. It’s in those moments I’ve gotta be my own coach. I’ve gotta be my own lifeguard. You can have all the family and friends in the world which are the greatest ever but the bottom line is you have to stand yourself up when you’ve found yourself fallen down because it’s so easy to beat yourself up and believe your own lies.

I hear so often you shouldn’t Google your own diagnosis, you shouldn’t self diagnose etc. etc. well, as far as I’m concerned, I think it’s okay as long as you’re careful about it. As a matter of fact, I recently read about a man who was named Visiting Professor of 2015 for taking his health into his own hands. Check out “e-Patient Dave” to learn more.

I’m very blessed to have this work area here that we do in which we are able to advocate for epilepsy through my husband and I’s organization The Epilepsy Network (TEN) and the website in which I’m able to blog often about my journey with epilepsy here. I couldn’t imagine not doing these amazing things.

Every single day I must take 10 pills and two vitamins. Gotta keep my body healthy! In regards to alternative treatments, yes I am open however, I do my own research thoroughly and I always have discussions with my neurologist before-hand.

If I had to choose between having an invisible condition or a visible condition, I would choose either or to be quite honest because I am not afraid to speak out, educate and advocate for epilepsy. Epilepsy is slowly growing in greater strength of support and understanding which I am so very thankful for. However there is still much work to be done here and around the world. Stigmas, fears, lack of understanding and lack support. This needs to be remedied yet.

I have chosen to make The Epilepsy Network (TEN) my full time chosen pathway. Educating and advocating is where I want to be. I’m not sure where God will lead this pathway in the future but I am trusting in Him to show me the way.

I find that the most difficult thing about accepting the reality of having epilepsy at times is having to put some really good moments in life on hold as a result of seizures, testing or anything related to epilepsy. However, it just makes me all the more appreciative when I can have a good time and enjoy the life that I have.

You know what I never thought I could do with my condition? Begin an Epilepsy Organization and a blog. I am astounded and so thankful to God for those amazing blessings right there. I count those blessings everyday.

Since being diagnosed with epilepsy, something I really miss doing is taking long drives at evening time. I used to take drives when the sun was just setting. I would park my car and just watch the sunset. I didn’t have that great of a car, but it took me where the sky was most beautiful. It looked like the whole canvas was on fire. I never wanted to leave. All before I ever knew epilepsy was coming for me. It was really hard to give up driving. I gave up driving on my own. Law enforcement didn’t tell me to. Doctors didn’t tell me to. They recommended it but they weren’t going to force me. I just knew that it was the right thing to do. I held onto my drivers license with the hopes that one day epilepsy would just walk away and never come back. I still believe with all my heart one day it will.

I’ve picked up a few new favorite hobbies since becoming diagnosed with epilepsy. I’m making an attempt to learn how to play bass guitar which seems very hard but I love a challenge. Photography is another love that I’ve always held near and dear to my heart. I have plenty more time for that these days which is great. Crafts are way too much fun. You can get lost in Pinterest let me just tell you that right now.

So many times, I’ve thought about this and you know, if I could have one day of normalcy. One day without epilepsy, as if epilepsy had never ever been here at all I’d probably get in the drivers seat with my husband, drive to a great location to watch the sunset and enjoy a glass of champagne. That would be so wonderful.

Epilepsy has taught me so much. Epilepsy has taught me not to take a single moment for granted. To be kind to everyone you meet. To be selfless. To take life with a grain of salt. To draw closer to God. To smile more. To laugh more. To find joy in the little things. To speak positive when you could speak negative. To be good to yourself. I could go on and on. I learn new things all the time. Every day.

It truly does lift my spirits when people tell me ” You are so strong! Keep on fighting! You’ll get through this.” Thank you to those who see me in my  journey, who care for the journey that I am on and believe in me as I take this journey. You give me strength.

One of my favorite Bible Passages I refer to along this journey is –

“But those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.” – Isaiah 40:31

When I meet and/or speak with another who is on the journey with epilepsy too, I’m encouraged to speak with them in that I like to tell them that everything is going to be okay. At first the road may be a little rocky, you may be sad and upset in discovering this diagnosis but it is not the end of the world and you have an entire amazing life to live yet. Place your eyes upon goals you want to set and overcoming the obstacle in front of you. Inspiring others walking the same journey as you. Life is still a beautiful gift.

I was and sometimes am still quite surprised at how some people will judge you when they discover that you have a medical condition. When I was diagnosed with epilepsy in 2008, it didn’t take long for most of my friends to fade out of my life, never to be seen again. Not all of them disappeared but most of them stopped calling. Stopped wanting to be a part of my life. Most of them no longer wanted to get together anymore. I was quite hurt and let down. Throughout the years, whenever word epilepsy was mentioned, a bewildered look appeared upon their faces. Shocked and confused that I could have this condition. Nervous perhaps at what to do or what to say and how to behave around me.

The nicest thing you could ever do for someone living with epilepsy or any medical condition is to let them know that no matter what, you will always be there for them. That their condition will never change the relationship you have with them. I know it certainly made my heart swell with so much joy and happiness when I heard this from my family and closest friends. Those who remained loyal and love me regardless, I am so thankful for them. Each and every day.

To know that you’ve taken the time to read this blog lets me know that you support my journey and I thank each of you for taking the time out to do so. It means so very much!

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

  • Marsha T

    Tiffany,
    I too have Epilepsy and I find Your Blog very uplifting. I was diagnosed in 2002 after I suddenly started having Myoclonic seizures. My Neurologist on further investigation also told me that I have ” Mixed” seizure types and at least one of those I have pro lay had most of My life and had went undiagnosed/missed diagnosed. We also discovered on doing a further health history that that I probably inherited my Epilepsy from BOTH sides of My Family,it’s something that doesn’t happen often,but does happen. God Bless You and I admire Your resolve to stay positive. That’s what I chose to do also.

  • Bonnie

    Thank you for writing this and starting TEN. We follow many organizations, TEN being one of them! My 13 year old daughter is trying to figure out how to deal with being ‘different’. We are open and honest about her Epilepsy with everyone and have tried to reinforce that she may have Epilepsy but it’s just a small part of who she is. Her seizures have gotten worse over the last year and a half and it’s very frustrating for her because before that they were controlled by meds. We now on our fifth med and praying this will be the answer.

    Thank you for showing that it’s okay to be ‘different’ and that life can still be full of love and laughter. Stay strong …. we’ll beat this <3

  • Karen

    I know exactly how you feel. I’ve had epilepsy for almost 50 years. It has kept me from many things, but it hasn’t kept me from the important things. I completed college, married, and raised 2 children. Thanks to the internet, I am constantly doing all kinds of research to see what is available worldwide. I learned from an EMT that seizures could be triggered by low blood sugar. Why didn’t any of my neurologists over the years mention that? Then I learned that exercise could lower blood sugar levels. Still no mention from my doctors. I found from research that it is being determined that epilepsy is a symptom of an autoimmune disorder. I asked my current doctor if he knew that because I have 2 sisters with different autoimmune disorders. He said he did , so why did I have to learn it from the internet?

  • charmaine

    Hi im 48 years old and have been living with epilepsy for 46 years, its become part of my life now and im quite normal. I’ve raised 2 wonderful children and have 2 grandchildren all epilepsy free. I get that quite often that you dont look like you have epilepsy. It is hereditry from my moms side of the family and im the only one of her 6 children to have epilepsy. I’ve dealt with it and will deal with it all my life.

  • Michelle Kreplin

    I read your article and enjoyed it a lot. I’ll be praying that our awesome God continues to improve them so you live a seizure free life. Also you have a surgery as I did last month or something else to improve your seizures for your future. Your article has inspired me with more things to do which I never thought of. 1 of my favorite passages from the bible is Nothing is impossible for God amongst many more. Hopefully some day you could drive again & other stuff as before though I know that’ll happen 1 day with Gods support everyday. Keep up this good work as you inspired me I have a feeling this will inspire others too. God bless you. From Michelle

  • shon

    I really enjoyed the article. As an African American woman, I try to avoid telling individuals, especially employers, that I have epilepsy. I heard that sayings, “You look to healthy to have epilepsy”. Well I am a firm believer in Phil 4:13 I can do all things through Christ which strengtheneth me……for this I do not allow negative stereotypes about epilepsy discourage me. Continue to spread a positive message. God bless!

  • Chris

    I’ve been living with seizures for about 15 yrs now. They came on with without any warning. I just now found this website it’s been a blessing. I’ve been diagnosed with grandmal seizures because of light. Thank you again ♡♡♡

    • Tiffany Kairos

      Hi Chris –
      I am very happy to hear that this blog has been of great help to you. 🙂 Photosensitivity is one seizure trigger that affects many of us living with epilepsy. I wish all the very best for you! God Bless!

  • Traci

    I have had epilepsy for the last 7 years. I have heard that exact comment, are you sure you have epilepsy? You look so happy and healthy…so sad! We experience daily challenges, why add being judged to it? Felt like your words were giving me comfort, just wish I could find the grace you have found. I hope I will find mine soon.

  • Tina

    I’m a single mother. I’ve been living with epilepsy for 15yrs. For the 1st 3yrs I didn’t wanna accept my diagnosis & how serious it was, I was only 16. I went off to college & had my son who was born beautiful, healthy & heaven sent. At 21, I finished college. I then tried hard for a few years to work. Until finally Dr.’s would no longer clear me to go back because I kept having seizures on the job. My son was 5. Eventually I came to terms, that if Im gonna have to stay home, I’m gonna do my very best raising my son & maintaining my health to do so. My son has been extremely patient & understanding. I cant drive so we have our fun days cooking/baking silly things like cookies that look like pizzas ect. I make sure I bond with him through sports & excersize. He keeps his grades up in order to be able to join teams, he was last seaons MVP & hopes to own a restaurant one day. I will speak up about my disability to anyone. I wish I didnt have it, but since I do.. I’m going to do my best in this lifetime to succeed. I plan on going back to school soon to major in Phscology. I recently got surgery to help with help in controlling seizures the device called a “VNS” if you’ve never heard of it, you should see if its for you. My son will be turning 12 soon. People often ask if he’s my younger brother, so you can imagine when some find out I’m epileptic as well…oh boy! Sometimes it can be a pian in the butt to tell, but I do it for just that reason. To remind people not its not a visual illness & they should educate themselves. Its motivating to know that world is growing. I would love to get a degree & help younger people who were just like I was remember, “Dont help it make you weak, make it make you stronger .”

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