Epilepsy,  Personal

Why I Post On Social Media About Epilepsy

Social media is a way to connect with people all around the world. A grand stage to stand on and educate, inspire, encourage, even network from the comfort of your own home, or from the palm of your hand.

Sometimes I’m asked what I do for a living. To sum it up in one simple sentence, “I live with epilepsy and raising epilepsy awareness is what I do.”

As an advocate, I wear a lot of hats. I’m a blogger, vlogger, content creator, and founder of a well-known online epilepsy community – The Epilepsy Network (TEN).

Here is why I post on social media about epilepsy:

To remind others (patients and caregivers) they aren’t alone:

I felt confused, afraid and alone after I was diagnosed. I knew no other person who had epilepsy or ever experienced a seizure. This is a common feeling that is experienced by both patients and caregivers. When I found an online support group, I observed how others supported each other, and I even started receiving great support. I no longer felt alone.

With the content I create, I want to plant seeds of hope in those with epilepsy who might feel alone. To remind them that they are never alone…

To show the reality of living with epilepsy:

Some people believe that a person with epilepsy only experiences tonic-clonic seizures (“The one where you drop to the floor and shake”). A phrase I’ve heard dozens of times. Part of the reason might be due to the media solely portraying that type of seizure in television and movies.

Posting about other types of seizures and warning signs can help family, friends and the general public know what to look out for should an individual begin acting ‘unusually’, in order to get them the help they need.

To help others live an easier life:

There’s no guidebook on how to live life with epilepsy – but there are methods that can be applied in order to make navigating life with epilepsy a whole lot easier, and I post about these things because I want to help others achieve this in their own lives.

To raise awareness of epilepsy:

Epilepsy is a worldwide health problem that is still stigmatized and misunderstood. I post about the condition with hopes of opening the eyes and ears of the general public, so that patients can feel confident in talking about their experiences, seizure first aid is known how to be administered should a situation arise, and individuals will be treated with compassion and care rather than neglected or abused.

To show how I live life with epilepsy:

I want to invite others who live with epilepsy, caregivers, and the general public into my world with epilepsy. I’m not shy about sharing how I navigate life with this chronic illness. If my experiences can encourage, inspire or assist, even just one person, then I’ve done my job.

To do something cathartic:

Posting about the challenges and difficulties that I experience, lessons that I’ve learned, and knowledge that I’ve gained, is cathartic. As I move forward, I learn a little more about myself each day.

To connect with others:

To be able to connect with people who “get it,” is everything. Sharing our experiences with one another can help us feel less isolated and alone. Posting about my life with epilepsy and listening to others affected by the condition has been extremely humbling and has forged many lifelong friendships. Connecting with others gives us a sense of purpose and a source of support.

What motivates you to post about epilepsy? Post in the comment section below.

Tiffany Kairos

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!

One Comment

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    Brandon Leonard

    I personally created a support group on Facebook because there aren’t any support groups for those who have epilepsy or caregivers and I needed it in a very hard time during my journey. I’m fortunate to be seizure free for 2 years after 20 years with them because I have the right medication, but so much has been a struggle. I want people to know they aren’t alone and to ask questions to each other locally and spread their experiences.

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