This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!
Every morning I wake up and wonder how I will function this day with my diagnosis of Epilepsy. This used to bother me to no end and that initial thought was soon followed by negative emotions. Today it’s different. I still have that initial thought in the morning but instead of negativity and dread I am filled with excitement and passion for the purpose and direction my diagnosis has provided me.
Finding my passion
My work, my collaborations, and my constant study are wrapped up in Epilepsy and I couldn’t be happier. I took something that was crushing my spirit, breaking my soul and at times literally killing me and turned it into what drives me.
Related: Searching for my passion – my quarter-life crisis
It started with stigma, always feeling different. Constantly feeling like I was being judged on something I had no control or choice over. Many of my decisions over the years were tainted by the fact that Epilepsy was in the driver’s seat. Living 28 years in what felt like an endless struggle, I made a choice that changed it all, the choice to use food as my medicine and embrace a ketogenic lifestyle.
A Keto Journey
Getting started with the Ketogenic Diet
“Going keto” was not an easy choice and I found myself eating things I hadn’t in years (red meat for one) all while having to stick to a regimented lifestyle of measuring my macros and giving up donuts. It took me outside my comfort zone and as a result I began sharing My Epilepsy Story via social media. I was searching for a community because growing up I never had anyone that understood the struggles of Epilepsy and this made me feel different and alone. I knew I didn’t want to feel like that anymore and thankfully my social media presence brought people into my life who understood my drive…and how my diagnosis played a role in it. It led to Ross & Kara the owners of Fat Is Smart Fuel inviting me to help out at their booth at Paleof(x). That weekend they introduced me to so many people. Little did I know that creating my Instagram account would connect me to them which would then create a ripple effect.
Each post on social media was a connection to someone, I was sending my story out into the world and tiny bridges were built, dots were connected and a community I had dreamed of began to form. I would have never guessed that sharing my backstory and my journey using a ketogenic diet on Instagram and Facebook would lead to so many amazing people, companies, friendships, and opportunities to help others.
My small world opened up and without realizing it, I found myself becoming comfortable with talking and sharing my diagnosis in a way I never had. I no longer felt the need to be cautious or even dare I say afraid to say “I have Epilepsy”. I always knew Epilepsy was bigger than me, it always had a life of its own and anyone living with Epilepsy knows it can truly hold the control at times. The moment I was diagnosed I began the long process towards acceptance. I went from a young kid who pushed and fought through life, to an angry teenager, to a struggling young adult to a thriving 30 something who found understanding, purpose and true acceptance within the ketogenic and epilepsy communities.
Opening up to opportunity
The more open I became the more a community surrounded me and opportunities began to present themselves. No longer afraid, I said YES to any opportunity to share my story. I went on podcast interviews, shared my story on the website Life Elektrik and eventually it led to speaking at conferences and various Epilepsy support groups around the country. Each person I met even critics and doubters inspired me to do more and get more involved in sharing my ketogenic lifestyle with those struggling with Epilepsy. Each company owner I met helped me spread my story via social media and guest blog posts. All of these people and companies are part of my community and we help each other achieve the goal of helping others find a healthy lifestyle.
Social Media is it’s own beast but by stepping outside the fear of stigma and sharing my Epilepsy story it led to connecting with The Ketovangelist Coaching Team, an amazing group of people helping others navigate a ketogenic lifestyle. And today, just a few years later, I am honored to be a Keto Coach for Ketovangelist.
By joining the team I am going small and working one on one with others who are starting to use food as medicine to heal themselves. I believe helping one person at a time can continue the ripple of bringing change and breaking stigma. Today I am doing online coaching with people all around the world who want to find different ways to heal and feel empowered. My goal each day is to meet people where they are and help them build their own bridges and create lines of human connection to break stigmas on all levels. Ultimately my hope is that through this process they are able to find a healing peace from their personal struggles no matter what they are.
Stamping out stigma
Stigma only thrives when we don’t reach out and connect, when we don’t share our story and when we don’t seek help. Allowing stigma to be attached to Epilepsy or any other diagnosis allows it to have control. It destroys the chance of building community, connection and showing mainstream audiences that we are more than a diagnosis. By stepping out of the darkness we can bring hope, empowerment and education to those still struggling. This is why I’m a Coach, this is why I am a Storyteller, and this is why I speak out.
NEXT UP: Be sure to check out the next post by Mike at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.Share your story
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