Marissa Ogea is a Humanities Pre-law major with a minor in Women and Gender Studies and a part of the Citizen Scholars program in the College of Arts and Letters. She will be graduating this weekend with the class of 2023. Throughout her time at Michigan State University, Marissa has committed to advocacy work in an effort to raise epilepsy awareness through her social media campaign Shaking Up the Dialogue. As a person with epilepsy, Marissa wants to help in the fight to break down stigma and assist in educating others about epilepsy. She explored this idea for her Citizen’s Project and explains it here.
”I am one in twenty-six.
One in twenty-six people will develop epilepsy at some point in their lifetime. I was diagnosed when I was eight years old with Benign Rolandic Epilepsy. Now, at twenty-two, it’s hard to think of my life without epilepsy and even harder to think about my life with epilepsy ten years from now, or twenty years, and for the rest of my life in general. Epilepsy is a brain disorder that affects the nervous system, prompting recurring, unprovoked seizures. There is no known cure for epilepsy, just treatments to help with managing seizure activity.
Throughout my childhood, I found myself hiding my epilepsy diagnosis from others out of fear. My friends had an idea that I had something different about me because of the number of pills I would have to take before we went to bed at sleepovers, but only a very extremely small handful knew there was something “different” about my brain, and that’s how I wanted to keep it. After some time, I became more comfortable sharing my diagnosis, and often gave impromptu, very much not official, “what you should do” seizure training to my friends when their eyes widened after sharing this part of my life with them.
In the Summer of 2020, I became an Epilepsy Awareness Ambassador through the Epilepsy Foundation of America. This group emphasizes on promoting awareness through advocacy efforts, which at the time of the pandemic, took place on social media through making infographics about epilepsy facts or sharing information given through the Epilepsy Foundation. During this time I began an Instagram account that documented my epilepsy journey being seven years seizure free at the time. I started finding other pages from other people who live with epilepsy and thought that this platform could do so much more.
In my junior year at Michigan State, I focused my Citizens Project through the Citizen Scholars program in the College of Arts and Letters to promote epilepsy awareness. I began a research study and epilepsy awareness campaign with the addition of my epilepsy Instagram, @Shakingupthedialogue. I would post epilepsy statistics, promote events hosted by the Epilepsy Foundation of America, and share content from other accounts to help build engagement and bridge the gap that is noticeable in educating others on epilepsy. Within the research side of my project, I found that the students on campus that I had reached didn’t exactly know what epilepsy was or the struggles that those who live with epilepsy face, but they knew they were interested to learn more. At the end of the semester as I was finishing up on my Citizens Project I was offered an internship at the Epilepsy Foundation of Michigan and spent the summer working alongside some of the most incredible people. During this time I realized how important it was to continue sharing my experiences with epilepsy and trying to educate others about epilepsy.
In the final semester of my undergrad at Michigan State, I revisited my Citizens Project and relaunched it to conduct a more thought out awareness campaign and research study given the knowledge I gained during my internship along with what I experienced during my first launch junior year. I posted content on my epilepsy Instagram regularly and found ways to increase engagement from my following to share information I wanted others to learn. I created more interactive posts through my Instagram story features with content such as “truth or false” “did you know?” polls, and sharing links to a variety of articles I had found to help spread epilepsy awareness. I conducted a research study similar to the one I did last year, but also added in questions that would help me improve how I run my Instagram account in hopes of reaching more people and how exactly I should incorporate epilepsy facts and other information. This final duration of my project was not only successful, but meant so much to me because of the genuine connections I made throughout the project from those who found my account and have been involved in raising epilepsy awareness.
After graduation, I plan to continue posting on @Shakingupthedialogue on Instagram because this is a continuous passion project of mine. Throughout the next portion of my time at Michigan State while I am pursuing a Masters in Nonprofit Leadership, Global Cultures,and Social Entreprise, I hope to incorporate things I’m learning and practicing through my program to further advocacy work efforts. In all honesty, I want to teach anyone and everyone I can about epilepsy so we can work to #endepilepsy and eliminate the stigma that the community faces each and every day– and I hope I can do that one post at a time.
Feel free to check out my account at:
