Living with a chronic condition is never easy, but living with two can feel like an insurmountable challenge. My journey with epilepsy and endometriosis has been a test of resilience, adaptation, and hope—a story I now share to empower others facing similar struggles.
I was 16 years old when I had my first seizure. Years later, at 24, and just months after marrying my husband, I experienced my second seizure. It was during that difficult time I was diagnosed with epilepsy. Neither my husband nor I knew much about the condition, and we certainly didn’t know anyone else living with it. Navigating life with epilepsy was overwhelming, unpredictable, and at times isolating.
Learning to Adapt
The early days were challenging. My seizures were uncontrolled and unpredictable, forcing us to reimagine what our life together would look like. My husband and I had to educate ourselves quickly, diving into online resources to better understand the condition. It was a big learning curve for both of us.
Epilepsy brought many sacrifices and adjustments. Social plans were interrupted by seizures, and even simple day-to-day tasks became a challenge. Yet, through it all, we remained committed to facing this battle together.
Two years after my diagnosis, I decided to transform my experiences into something positive. As a way of reducing the stigma surrounding epilepsy and helping others like me feel less alone, I began sharing my story and raising awareness. This was the beginning of The Epilepsy Network (TEN) and my blog, Rise Above Epilepsy. What started as a personal mission to educate others quickly grew into an online community providing support, information, and encouragement for people affected by epilepsy.
Another Invisible Battle
While I was navigating the challenges of epilepsy, I was also battling another condition: endometriosis. I had suspected this diagnosis for years, as the menstrual pain I experienced was excruciating and debilitating. However, my pain and concerns were dismissed time and time again by OBGYNs. Despite my pleas for testing, I was continuously told to try birth control instead.
On two occasions, I followed their advice. Both times, the birth control worsened my seizures, further complicating my epilepsy management. Still, I pressed on, enduring the physical toll of endometriosis while trying to advocate for myself in a medical system that often ignored my voice.
Endometriosis didn’t just affect my quality of life—it impacted my epilepsy. The hormonal shifts associated with my menstrual cycle often triggered seizures, adding yet another layer of difficulty to managing my condition. On average, it takes a woman 10 years to receive a diagnosis of endometriosis. For me, it took 20.
When I finally underwent a hysterectomy, it brought a bittersweet sense of relief. Although I grieved the loss of certain possibilities, the surgery helped alleviate some of the hormonal fluctuations that had been worsening my seizures.
Finding Strength in Advocacy
Through these dual battles, I found my strength in advocacy. Raising awareness for epilepsy and endometriosis became a way to turn my pain into purpose. My social media platforms became spaces where I could connect with others, share educational content, and inspire people to persevere through their own challenges.
If there’s one thing I’ve learned, it’s the importance of listening to your body and advocating for your needs. Trusting your instincts, pushing for answers, and prioritizing your health are key to finding both relief and empowerment.
To anyone newly diagnosed with epilepsy or endometriosis, know that you are not alone. It may take time to find your footing, but there is a community out there waiting to support you.
Connect with me
Today, my mission continues as I share my journey with epilepsy and encourage others to do the same. You can find me on Instagram, Facebook, X, and TikTok, and connect with The Epilepsy Network (TEN) on Facebook.