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  • 5 Mistakes I’ve Made With Epilepsy

    March 15, 2022 / 2 Comments

    Learning to live with a chronic illness can be challenging. There is no shortage of new things to learn and juggle. Mistakes are bound to happen and I’ve made plenty…

    By Tiffany Kairos
  • Getting Out Of My Chronic Illness Comfort Zone

    February 1, 2022 / No Comments

    Have you ever heard the quote “Get comfortable being uncomfortable”….? That’s a clear statement for those of us living with a chronic illness. Being diagnosed with a chronic illness can…

    By Tiffany Kairos
  • 5 Ways to Battle Back Isolation While Living With Epilepsy

    January 18, 2022 / No Comments

    What those with an outside perspective might not understand is how epilepsy can affect your mental health. Many people believe that living with epilepsy is just experiencing the physical aspect…

    By Tiffany Kairos
  • 7 Ways to Support a Friend with Epilepsy

    December 8, 2021 / 1 Comment

    Throughout our lives, we are likely to have a friend who is diagnosed with a chronic illness. Sometimes we know exactly what to do, other times we’re clueless. There are…

    By Tiffany Kairos
  • 5 Things Everyone Should Understand About Epilepsy

    November 10, 2021 / 2 Comments

    Epilepsy is widely misunderstood due to lack of awareness. There are so many aspects to the condition that most are unaware of. Have a look at 5 things everyone should…

    By Tiffany Kairos
  • 8 Best Apps To Help Tackle Epilepsy

    October 31, 2021 / 1 Comment

    Living with epilepsy is more than just knowing your seizure triggers, current medication, and dosage. Apps designed to manage epilepsy can help you to take a practical approach to your…

    By Tiffany Kairos
  • How To Keep Your Relationship Rock Solid Despite Living With Epilepsy

    October 19, 2021 / No Comments

    How To Keep Your Relationship Rock Solid Despite Living With Epilepsy Having a medical condition such as epilepsy, can have an effect on even the greatest of relationships. The one…

    By Tiffany Kairos
  • Doctor and patient

    Things to Consider When Choosing a Doctor

    August 11, 2021 / 1 Comment

    Being diagnosed with a chronic illness is one of the hardest things that can happen to us in our lifetime. I was 22 when epilepsy unexpectedly barged through the doors…

    By Tiffany Kairos
  • Tourist traveling

    5 Helpful Tips for Traveling with Epilepsy

    June 29, 2021 / No Comments

    Ready to hit the open road or hop on the plane to head to that tropical island or that world-renowned national park? Not until you’ve secured everything revolving around your…

    By Tiffany Kairos
  • Writing a letter

    A Letter to Myself the Day After My Epilepsy Diagnosis

    May 26, 2021 / 3 Comments

    “Life with epilepsy doesn’t come with a handbook. We write it as we go along.” You’ve been diagnosed with epilepsy. Where do you go from here? I know you’ve felt…

    By Tiffany Kairos
  • Person feeling guilty

    7 Things Not to Feel Guilty About Living with Epilepsy

    April 14, 2021 / 4 Comments

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

    By Tiffany Kairos
  • Group of people talking

    5 Things Those Living With Epilepsy Want You to Know

    March 19, 2021 / No Comments

    Epilepsy can intrude into anyone’s life, at any time. Millions of men, women and children battle this selfish and at times difficult condition every single day. All of us diagnosed…

    By Tiffany Kairos
  • Shoes on the road

    Setting Boundaries with Epilepsy – What You Need to Know

    March 5, 2021 / No Comments

    Living with a chronic illness means learning to get comfortable setting boundaries and saying “no”. My epilepsy diagnosis required placing certain actions and activities on the back burner to avoid…

    By Tiffany Kairos
  • Husband and wife

    5 Things to Remember When Being a Spouse with Epilepsy

    February 5, 2021 / 3 Comments

    I’m nowhere near the perfect wife, but I do know that marriage with a chronic illness is challenging, and takes intentional effort. The Epilepsy Condition Living with epilepsy and learning…

    By Tiffany Kairos
  • Open book

    8 Qualities You Can Find in Someone Living with Epilepsy

    December 30, 2020 / 1 Comment

    Often, I reflect back on times that I would tell others that they would never understand what I was going through because they were not living with my epilepsy. Many…

    By Tiffany Kairos
  • Speech bubble

    6 People You Meet Along Your Journey with Epilepsy

    December 8, 2020 / No Comments

    You’ve been diagnosed with epilepsy. A life-changing experience. Epilepsy doesn’t always show its cards and it can go unnoticed by family, friends and the public. With epilepsy being a part…

    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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