Diagnosis and year of diagnosis
I was diagnosed with epilepsy in 2000, and I have been living with epilepsy for more than 26 years. My journey has included countless seizures, medications, neurologists, hospital visits, and eventually VNS surgery. It has been a long and difficult road, but it has also shaped who I am today.
Symptoms leading up to my diagnosis
Before my diagnosis, I experienced seizures and symptoms that were not immediately understood. As time went on, it became clear that something serious was happening and that I needed specialized medical care. My epilepsy has continued to affect my life in many different ways over the years.
Was it difficult to get diagnosed?
My journey has definitely not been a simple one. I have seen several neurologists and gone through many different treatments and medications. I have experienced medication changes, detoxing from medications, hospital visits, and eventually underwent VNS surgery. Finding the right treatment and trying to manage my seizures has been a continuing journey.
What were my thoughts when I learned my diagnosis?
Being diagnosed with epilepsy changed my life. At the time, I don’t think I could have imagined everything I would eventually go through. There were moments of fear, frustration, uncertainty, and wondering why this was happening to me. But over the years, I learned that epilepsy would be something I live with—it would not define who I am.
How has epilepsy impacted me?
Epilepsy has affected so many parts of my life. There have been things I’ve had to give up, including playing soccer and driving. I’ve had to make major changes to my medications and lifestyle, deal with seizures and hospital visits, and learn how to navigate situations that many people never have to think about.
But epilepsy has also given me a purpose. It has made me stronger and has inspired me to become an Epilepsy Advocate and Ambassador. I want to use my experiences to educate others, raise awareness, and remind people living with epilepsy that they are not alone.
Who has supported me?
My family, friends, teammates, coworkers, medical professionals, and the epilepsy community have all played an important role in my journey. Their support, encouragement, thoughts, prayers, and willingness to stand beside me have helped me continue fighting through the difficult moments.
I am also incredibly grateful for everyone who has supported me in spreading epilepsy awareness and sharing my story.
What would I tell someone who was newly diagnosed?
The one thing I would tell someone newly diagnosed is:
Don’t let epilepsy define you.
Your diagnosis may change certain things in your life, but it does not take away who you are, your dreams, your goals, or your worth. There may be difficult days, setbacks, and moments when you feel completely overwhelmed. Don’t be afraid to ask for help, speak up about what you’re experiencing, and advocate for yourself.
Most importantly, you are not alone.
Keep fighting. Keep believing in yourself. Take things one day at a time, and remember that your story still has so many chapters left to be written.
What are my hopes for the future?
My hope is to continue moving forward, continue fighting, and continue sharing my story with people around the world. I want to educate others about epilepsy, help break the stigma surrounding seizures, and let people know what living with epilepsy can really be like.
I hope that by sharing my experiences, I can give someone else strength during a time when they may feel scared or alone.
I want to continue being an Epilepsy Advocate and Ambassador, spreading awareness and making a difference in the epilepsy community.
After more than 26 years of this journey, I am still here, still fighting, and still believing that my story can help someone else.
My epilepsy is part of my story—but it is not the whole story. 💜
