Epilepsy Awareness Matters

I am a 20-year-old woman still battling epilepsy and seizures. For many years, I went undiagnosed and misdiagnosed, living with seizures without knowing what was truly happening to my body. It wasn’t until I was about 15 years old that I finally received an epilepsy diagnosis. After being diagnosed, the journey was far from easy. Medication after medication, trial after trial, it was a constant struggle to find what worked for me. Each new treatment came with hope, frustration, and uncertainty. 

The first time I was diagnosed, finding the right treatment slowly took a toll on me. After trying several medications, my body became exhausted, and my mind felt trapped. While the medications worked to control my seizures, they also controlled everything else, like my emotions, my energy, my sense of self. I felt like I was surviving, not living. Epilepsy didn’t just affect my health; it consumed who I was, leaving me feeling disconnected from myself and the life I wanted. Eventually, I did find the right medication, and I went seizure-free for four years; two years while on medication and two years off medication. During that time, I finally felt a sense of normalcy and freedom that I had been missing for a long time.

Unfortunately, my seizures reappeared in my life about eleven months ago. Since then, I have been struggling daily, either due to seizures or the side effects of seizure medicines. Living with epilepsy again has been physically and emotionally exhausting, and some days feel heavier than others.

When my seizures came back, I was devastated. I never once believed I would have to face this again. I thought I had beaten something that haunted me for years. Finding out they were back, and worse than before, felt like my world had collapsed and that everything I thought I had fought for was ripped from my hands. I knew instantly that I was being pulled back into a fight I never wanted to relive.

Even so, I continue to seek a future where my epilepsy does not define me or control my life. I think, I hope, and I believe that if I were given that chance of freedom, normalcy, and happiness once, I can fight for it again.

I wanted to share my story because epilepsy awareness is not shared nearly enough. So many people live, survive, and struggle with it every single day, but their experiences often go unseen. Sharing a personal diagnosis can be misunderstood or judged, which makes it even harder to speak up. If more people understood what comes with epilepsy, not just the scary episodes that outsiders see, but the exhaustion, the uncertainty, the treatments, and the daily battles, they could be more compassionate, more aware, and less afraid to help or intervene. 

The fact that we live with a hidden disability, yet keep fighting, keep moving forward, and keep striving to be our best, even when life hands us terrifying episodes, life-altering treatments, and doors that aren’t always open, shows a strength most people will never see. Awareness matters because understanding can save lives, ease struggles, and remind those of us living with epilepsy that we are not alone.