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  • Gifts

    The Ultimate Gift Guide – Gift Ideas for Someone with Epilepsy

    November 20, 2020 / No Comments

    Epilepsy is hard to explain, let alone understand. It can be a real head scratcher to come up with an ideal gift for someone living with epilepsy, especially if you…

    By Tiffany Kairos
  • Woman with red hair

    Things to Never Do When Someone Tells You They Have Epilepsy

    November 6, 2020 / 1 Comment

    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…

    By Tiffany Kairos
  • How I Exercise While Living with Epilepsy | Plus What You Need to Know Before Hitting the Gym

    September 30, 2020 / No Comments

    This is a topic that many people have reached out to me in regards to and as someone who avidly takes part in exercise, I find it beneficial and very…

    By Tiffany Kairos
  • brain fog

    Understanding Brain Fog And Epilepsy

    August 31, 2020 / 3 Comments

    Speaking candidly, alongside seizures, brain fog is one of the most difficult – and sometimes exhausting – parts of living with epilepsy. What does brain fog feel like? Brain fog…

    By Tiffany Kairos
  • common questions

    10 Most Common Questions People Ask Me About Epilepsy

    July 19, 2020 / No Comments

    Over the many years of living with epilepsy, I’ve received a lot of questions about my condition, understandably. Some come up more often than others. Here are 10 of the…

    By Tiffany Kairos
  • woman at the beach

    When They Say “I Don’t Know How You Do It” Living with Epilepsy

    June 17, 2020 / No Comments

    Living with epilepsy is not a walk in the park. It’s a daily challenge. Not only physically, but emotionally and spiritually. The condition stretches you to your breaking point, like…

    By Tiffany Kairos
  • teapot

    How I Upcycle Epilepsy in My Life

    May 28, 2020 / No Comments

    “If you give up, you’ll have an attitude of resignation, of defeat that will affect—and infect—the rest of your life. Acceptance is empowering because it’s a choice you’ve made. Even…

    By Tiffany Kairos
  • Motherhood

    Epilepsy and the Dream of Motherhood

    May 9, 2020 / 4 Comments

    I’d always wanted to be a mother. At the age of nine on my birthday, I didn’t ask for barbies or make-up. I didn’t ask for glittery toys, no. Instead…

    By Tiffany Kairos
  • speech bubble

    You Don’t Look Like You Have Epilepsy

    April 24, 2020 / 5 Comments

    I live with Epilepsy. I have lived with this condition for over a decade. I was diagnosed with this condition in 2008. Four short months after marrying my husband. I…

    By Tiffany Kairos
  • Woman in a wheat field

    10 Things to Remember When Epilepsy Walks Into Your Life

    April 1, 2020 / No Comments

    When epilepsy walks into your life, it’s as if a tornado has unexpectedly tossed about your entire life and you’re left to pick up the pieces and rebuild. For some,…

    By Tiffany Kairos
  • Coronavirus

    How I Navigate My Epilepsy Self-Care During Coronavirus

    March 27, 2020 / 2 Comments

    Self-care is an important component of all-around wellness when you have a chronic illness. For example, epilepsy. But suppose an unanticipated situation shakes up your everyday self-care routine. How do…

    By Tiffany Kairos
  • Person being angry

    5 Things Not to Be Angry At Living with Epilepsy

    March 4, 2020 / No Comments

    Becoming diagnosed with epilepsy is a life-altering event. Epilepsy does not care your age, your race or time within your life. This condition can happen to anyone. Some are welcomed…

    By Tiffany Kairos
  • Mental health

    How to Protect Your Mental Health While Living with Epilepsy

    February 15, 2020 / No Comments

    What Is Mental Health? Mental health includes our emotional, psychological, and social well-being. It affects how we think, feel, and act. It also helps determine how we handle stress, relate…

    By Tiffany Kairos
  • Don’t Feel Sorry For Me Because I Have Epilepsy

    February 7, 2020 / 2 Comments

    It’s never easy when someone that you know or someone that you love has just been diagnosed with a chronic illness. What can you say to show that you care…

    By Tiffany Kairos
  • How I Practice Self-Renewal While Living With Epilepsy

    February 3, 2020 / No Comments

    What is self-renewal? In reflecting on this, it’s looking at life anew, or maybe even sewing the seeds of things that you’ve been meaning to do for a while. Self-renewal…

    By Tiffany Kairos
  • What Epilepsy Reminds Me

    January 29, 2020 / 3 Comments

    Over a decade. It has been a long journey and within this journey, I have learned so much, experienced so much, wrestled so many emotions, have had the opportunity to…

    By Tiffany Kairos
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About Me

Tiffany Kairos

Hi there! I'm an epilepsy patient advocate, blogger, content creator and the founder of The Epilepsy Network (TEN). Within this blog I talk about my experience with epilepsy, also providing tips, encouragement and motivation to live your best life while navigating epilepsy.

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I had so many who, what, where, when and how’s a I had so many who, what, where, when and how’s after being diagnosed with epilepsy. My head was spinning! 😵‍💫

Double tap if that was you too!! 🙌🏼

We aren’t given a map or blueprint on next steps but what I found to be extremely helpful was leaning on those within the epilepsy and by extension, entire chronic illness community. 

YES! I’m talking about you rockstars! 🌟👏🏼

When just starting out focus on 3 key things:

⚡️ Build a health care team - To help best manage your symptoms and medication
⚡️ Keep an epilepsy diary - To record when seizures happen and to identify triggers
⚡️ Find support - Connect with patients and caregivers right here on IG who can provide helpful resources, advice, encouragement and support! 

What’s another life hack you’d add to the list? Post it below and let’s start a conversation! 👇🏼

Tag a friend who might like this and add to your story! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
This is something that my husband has expressed. I This is something that my husband has expressed. I could never imagine stepping into those shoes I cannot express enough how grateful that I am to him for being so strong in these moments because surely it isn’t easy to witness someone you love undergo something you have no control over. Life partners and caregivers are heroes. 🥹

Some of my tonic clonic seizures can last between 1-2 minutes in length. 

Do you know the length of time your seizures last? ⏱️

Drop a purple heart in comment box and let’s show our gratitude for all caregivers today! 💜

Don’t forget to share to your story! 🫶🏻
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #spooniesisterhood #raiseawarenessofepilepsy#tiffanytalksepilepsy #spooniestrong #caregivers
After I was diagnosed with epilepsy, I made the de After I was diagnosed with epilepsy, I made the decision to stop drinking alcohol. 🙅🏻‍♀️

Alcohol can make epilepsy medication less effective or make medication side effects worse. In general, it’s OK for people with epilepsy to have small amounts of alcohol but I recommend talking to your doctor before you do so. 

I like celebrating special occasions, and sometimes alcoholic beverages are served. If you like the occasional glass of wine or beer did you know that you can still do that without the alcohol? 

There are many industries that create delicious non-alcoholic beers and wines. You can still have a good time! Without the alcohol. 😉🥂

A few yummy wines I recommend trying: 

🍷 @drinksurely 
🍷 @frewines 

Have you stopped drinking alcohol since being diagnosed? Do you have a favorite non-alcoholic beverage? Post in the comments and let’s kick off a sweet conversation! 

Cheers! 🥂🫶🏻

Tag a friend who aught to see this message and share to your story! 
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #nonalcoholicwine #nonalcoholicbeer #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
I’ve lived with epilepsy for almost 15 years and I’ve lived with epilepsy for almost 15 years and it’s been one wild ride in that span of time! 🫠

Plenty of ups, downs, and all arounds. 

Double tap if that’s you too! 🙌🏼

I’ve learned and grown a lot in the good moments and the bad.

If you or someone you care about has just been diagnosed with epilepsy, I see you!! The journey isn’t always easy in the beginning and can take a bit of time to adjust. 

Don’t lose hope or give up. You’ve landed in the right space to receive resources and support from a community filled with those who ‘get you’. 

If you want to read more about my life with epilepsy, tap the clickable link in the bio.

Tag a friend who should see this and share to your story! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Today is World Tattoo Day! ✌🏼 A little over Today is World Tattoo Day! ✌🏼

A little over a decade ago, I decided to get a tattoo. I wanted it to symbolize that in having epilepsy, despite any and all challenges, I will always rise above the storm. ✊🏼

My husband @ka1ro5 designed the concept and am reminded of this message every time I see it. 

Double tap in support of epilepsy awareness! 🙌🏼

Do you have an epilepsy or other chronic illness tattoo? Tell me about it in the comments! 👇🏼
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #spooniesisterhood #raiseawarenessofepilepsy#tiffanytalksepilepsy #spooniestrong  #worldtattooday
When I left the doctors office after being diagnos When I left the doctors office after being diagnosed with epilepsy, I carried a thin folder with a teeny pamphlet and a few pieces of paper describing the condition.

It wasn’t much. I felt completely clueless. Never had I heard the word “epilepsy” before. I also had a weak understanding of what exactly a seizure was. 🫠

Double tap if you can relate to this! 🙌🏼

I knew that I was going to essentially “go to school” and “be my own teacher”. By that I mean:

✨Hit the books
✨Utilize reputable online resources and 
✨ Connect with others in local and online communities/groups 

When you understand nothing (about a particular topic), you’ve got to do something to get ahead of the game. 

The stress, fear and uncertainty that I felt starting my journey was replaced by confidence and determination the more I devoted my time to learning about epilepsy.

I encourage you to be sponges and continually soak up information. Share it with others too! That’s the beauty of community. We support one another always. 

Tag a friend who should see this and share to your story! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Being given the opportunity to speak to students a Being given the opportunity to speak to students about epilepsy, and discuss my life with epilepsy is an experience and privilege. 

I’m occasionally invited to speak to college-level students and love seeing how intrigued they are and their desire to know more. 

As they learn from me, I learn from them that there is a great need for more awareness. Talking about it erases misconceptions, and fears. And gets gears turning in the minds of those who lack knowledge. 

Sometimes, when I finish my presentation I have students come to me and tell me about a family member or friend who has seizures and asks how they can help or what to look out for. 

Don’t be afraid to talk about epilepsy. People want and need to know more. You might just also help someone who is afraid to tell their story. You might help save a life. 🫶🏻
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #spooniesisterhood #raiseawarenessofepilepsy#tiffanytalksepilepsy #spooniestrong #publicspeaker #keynotespeaker
Not all seizures involve losing consciousness. I h Not all seizures involve losing consciousness. I have two types of seizures. Tonic-clonic and complex partial seizures.

When I experience complex partial seizures, sometimes I’m rendered unable to speak and I stare blankly for a few seconds. 

Those with very little understanding of epilepsy, might assume I’m ignoring them or that I don’t care about what they’re saying.

This just isn’t so. I have no control of what’s happening to my body during those few seconds. 

There’s no off switch or a sign that reads “temporarily out of service.”

But believe me, I do care about you and all that you have to say. 🤍

Has anyone ever mistaken your seizure for something else? Tell me about your experience in the comments! 👇🏼

Tag a friend who needs to see this and share to your story! 🫶🏻
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #spooniesisterhood #raiseawarenessofepilepsy#tiffanytalksepilepsy #spooniestrong
There’s no such thing as TMI with epilepsy as fa There’s no such thing as TMI with epilepsy as far as I’m concerned.

Double tap if you agree!! ♥️

The very moment I became diagnosed with epilepsy, I hit the books and scoured the internet for information about epilepsy and seizures. 

I wanted to understand every drop in existence so that I could fight back and work well alongside my medical team. 

This became especially important to me when I dedicated my life to advocacy. If epilepsy was going to be a part of my life for the foreseeable future, I wanted to know this entity occupying my body entirely. 

I wanted to help other individuals - patients and caregivers, navigate their lives in a much easier way. Help the public understand in order to be able assist when necessary and erase any stigmas looming. 

Even after 15 years living with epilepsy, I’m still learning something new and I love it. It helps me so I can help others.

How about you? Have you learned something new about your illness lately? Tell me about it in the comments!

Tag a friend who aught to see this and post to your story! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
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Disclaimer

This blog is not here to replace medical advice from trained professionals.

Please seek medical advice.

This blog serves to offer my personal experience with epilepsy, what has worked for me, encouragement and support.

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