Today, Sam Diann is the epitome of self-advocacy. It’s an impressive thing, to have such confidence in your own voice, but it’s been a long road to get there. The starting point came when Sam was diagnosed with epilepsy at the age of eleven after having her first seizure during her sixth grade history class.
“I didn’t even know what epilepsy was, I didn’t know what seizures were. It was a whole new concept to me,” she said. “But my mom was my voice. I had to start learning how to navigate my life with epilepsy, while she was always on top of recording all my seizures, recording when I had my period, fighting with my neurologist. She made sure we got the answers we needed.”
While Sam hasn’t yet been diagnosed with catamenial epilepsy (CE), she’s confident that that specific classification will be decided soon. See, Sam had just started her menstrual cycle a few days before her first seizure. Throughout her teenage years and into her twenties, every seizure fell around the time of her monthly period. But getting medical professionals to believe her – and her mom’s meticulous tracking – was a different story.
“They always dismissed us, saying ‘No, your hormones have nothing to do with it’ or ‘There’s no such thing as your menstrual cycle affecting your seizures.’ But today, it’s more widely known that a lot of women are affected by CE,” she said. “It actually wasn’t until a few years ago that my own neurologist was finally willing to acknowledge this connection. I’m currently trying to see an epileptologist in order to finally get my CE diagnosis.”
In the 20+ years since her diagnosis, Sam has continued to face challenges caused by her epilepsy, but one of the largest challenges is perfectly fixable: access to medical care.
“I live about an hour from Los Angeles and there aren’t many specialists here, so I’ve had to fight tooth and nail just to get any sort of exam done. When I was first diagnosed with epilepsy, I actually didn’t have an EEG done. My family had to fight for those, and I still didn’t end up getting my first MRI done until I was in my late twenties,” she said. “It’s at the point where if I didn’t want to see my neurologist any more, I would have to find a neurologist in LA, and add all of that travel into my treatment.”
Outside of these medical battles, Sam has had to contend with what this diagnosis means for her life.
“A lot of times, I was told that I couldn’t live a normal life, that I would be restricted in everything. I hated that because I’m such a free spirit,” she said. “Hearing it so often eventually made me have lower self esteem. I had a wonderful support system, but I didn’t think much of my own capabilities. I heard this narrative so much to the point where I thought epilepsy marked the end of the life that I wanted.”
Still, as the years have passed, Sam’s found a few ways to help manage her epilepsy. In addition to a daily medication and a rescue medication, she makes a point to live a healthy lifestyle. This includes drinking ample water, getting quality sleep, eating less sugar, and trying to control her stress levels.
“I have to be careful in how I live my life. It can be like a big snowball: If I stress too much then I can’t sleep. If I can’t sleep, then I can have a seizure,” she said. “You can get so overwhelmed so quickly if you don’t stay on top of it.”
Years into her journey with epilepsy, Sam began posting about her condition on social media, simply to help others feel less alone.
“When I was growing up, when I first got diagnosed with epilepsy, when I was trying to figure out my new life with epilepsy, I felt very alone,” she said. “I felt like no one understood me. So I wanted to create this environment and community for people to feel like others truly get what they’re going through and what they’re feeling.”
Before long, Sam was posting to social media, writing a blog, and launching a podcast, called Figuring Out Epilepsy. Behind all of this visibility is a very specific intention.
“I could have just done content that’s about epilepsy but never shows me or my face,” she said. “But I make videos and I post my face and my story so that people can understand that people living with epilepsy look just like everyone else.”
Sam may soon explore this intention even further by launching a YouTube channel to vlog her daily experiences living with epilepsy. Overall, she hopes that her work helps the epilepsy community and helps to educate others – all while setting a positive example for her own daughter.
“I hope that she sees this as proof that nothing can stop you when you put your mind to something. Life is going to throw all kinds of obstacles at you, but that doesn’t mean you can’t have a happy life,” she said. “Just because I have epilepsy doesn’t mean I’m less than.”
Today, 34-year-old Sam is hopeful that her content will serve as a resource for people newly diagnosed with epilepsy. She wants to help others become their own best advocates, especially if they’re battling similar medical issues that she has had to deal with.
“Life doesn’t end just because you got diagnosed with epilepsy. If you want to have a child, I don’t think any chronic illness should stop you from becoming a parent,” she said. “Epilepsy doesn’t define the type of person you are or the type of parent you are. You get to define what epilepsy means and you get to choose to live your life to the best of your ability.”
