Thankful Thursday: Rebuilding my life with Empowering Epilepsy

I doubt my experience with learning I have epilepsy was unique: the tests, the diagnosis, the prescription, and then being sent out the door. In my experience, there is a general lack of "whole person" care when it comes to epilepsy. Even though your life changes overnight, there was nobody in the healthcare pipeline who was there to explain what life with epilepsy meant in the short and long term, what I needed to know, the risks, the things to look out for, the trade-offs, how to advocate for myself, or even how expensive the medications could be.

Ten months into my diagnosis and with seizures still not controlled by medication, I was starting to lose hope that my life would ever resemble what it had once been before epilepsy. I was mourning my past self but also determined to get as much information as I could to protect my quality of life and independence. That was hard--I was being passed from neurology resident to neurology resident, with no continuous point of care and what seemed like a deeper lack of knowledge about epilepsy. Trying to find the education, guidance, and community I needed was also hard--virtual support groups were often no longer operating or poorly facilitated. A social worker sent me links that were totally irrelevant, like suggesting a local group that focuses on pediatric epilepsy (I'm in my forties...).

I found Empowering Epilepsy and felt this was my last shot. I had no idea how much hope and improvement signing on to that monthly call would bring me. It was everything I had been searching for. I was able to ask an epileptologist questions directly and got great advice. I learned from others things I should have been told by my doctor, but wasn't. I could talk with other people who had my same type of seizures and had been down the same road of struggling for comprehensive care, and learned what worked for them. I got to hear from people who understood the intricacies of living with this disease and who genuinely want to support each other. Leigh knows a lot of medical professionals in this space and made valuable suggestions, and offered a free 1:1 patient education session so I could learn all the things I need to know. She was encouraging and backed up her sense of hope with action. No doctor had done this for me, but Empowering Epilepsy did. I can't imagine not having this resource, I truly can't. I am so grateful this organization exists, and I can see Leigh's hard work and endless passion for this mission every time we talk. For the first time in almost a year, I am looking forward to rebuilding my life thanks to this organization.