Raising Epilepsy Awareness Through Storytelling and Advocacy – Interview with Allany Muniz

Diary of an Epileptic is a digital social media brand that brings epilepsy awareness to individuals. Allany Muniz uses her brand to express frustrations of life, spreading awareness. After being diagnosed in high school, Allany's identity changed forever, but from her experiences, she is giving a voice to the unspoken through social media and beyond.

Allany Muniz, Founder of Diary of an Epileptic

Please introduce yourself, your hobbies, your favorites, you at home, and in business. Tell us something interesting about yourself.

My name is Allany Muniz, and I’m a 29-year-old from Illinois. I am interested in history, criminal justice, improving myself, literature, and spending time with family and friends. I grew up near Chicago, Illinois, but I now reside closer to St. Louis. I have my hobbies like sewing, coloring, slowly baking, decorating (whether for parties or homes), and collecting T-shirts. Diary of an epileptic is a whole business that is used mainly through my cell phone. While having a chronic illness can be a toll, it doesn't get in the way of expressing epilepsy awareness, and often a break gives me time to review my next content. 

What inspired you to start Diary of an Epileptic and share your journey online?

The inspiration for Diary of an Epileptic began in 2019, when I would randomly have these vivid creations in my head, where I’m talking to the camera or having conversations, as if I'm in an interview. In 2020, these creations became a reality. As I was bedridden due to surgery, it didn’t give me any options as to activities to participate in. Another inspiration I took was when I was diagnosed at 14, and I didn’t really have a lot of resources for my mother and me to get a better understanding of Epilepsy and what Epilepsy is like. I didn’t even like a lot of things that I’ve learned now about Epilepsy because of my content-creating journey, I would still be clueless about various things about Epilepsy. Unfortunately, people in the epilepsy community have very little accurate information about epilepsy. 

What is the mission behind your platform and the work you do today? 

The mission is to bring Epilepsy awareness to those who did not get the proper resources or who are more afraid than curious once seeing the videos on other social media or on the Epilepsy Foundation website. Also, like it is also used for those who feel uncomfortable telling their story to Parker group because unfortunately Support groups can be more cliquish and if it’s not if it’s something that the admin isn’t approved of or it’s not something that like they put out there than they do, they do crucify the person who is trying to tell their story.

What challenges did you face on your epilepsy journey, and how do these experiences shape the way you help others now?

The challenges I faced even to this day as neurologist they’re saying because at what I first was diagnosed they called my seizures complex is now they called them focal on a aware seizures and yeah, neurologist still say complex seizure so the terminology is not up-to-date as to what is being current versus versus old medical information as well as just realizing that seizures are more than just you know more than one way of having a seizure, which it was not to my acknowledge before my content creating journey and navigating life as a especially since I have a little more freedom than what is assumed people with Epilepsy have so it’s always the stigma of oh you’re not an epileptic because you don’t do this that in the third and just learning that my concerns of Epilepsy is just as valid as someone else’s. 

How do you support and empower people living with epilepsy through your content and advocacy?

I see that Epilepsy is not just one form or not just the common knowledge that is that is continually used not only through like Epilepsy foundation website is better like other contents and sometimes it’s just the same repetitive information and not like another way of expressing it, which has been a continuous problem in Epilepsy community and how you getting the message from our commute from the community into society of like what Epilepsy is, especially with the media stigma of epilepsy. Also, I'm bringing up and would also like to have anyone's experiences, or if there's something you want me to talk about with engagement through not only my video in my newsletter.

What sets your approach apart from others in the epilepsy awareness and support space? 

What makes me different from other content creators is that I'm a little more like showing them that you can drive. You can drink coffee and still do a bunch of things because there’s always a misconception that if someone can do something, that means everyone else can, but in reality, everyone’s experience is different. Another thing that sets me apart is that I talk about crime victims because a lot of people who have epilepsy, their stories don’t get told, or lack thereof, of national coverage. Also, my newsletters allows me to spread Epilepsy awareness from either the check me out or did you know because unfortunately, there are a lot of things that were not told about Epilepsy and it’s and I want my and I don’t want and I want to be able to get someone the proper knowledge or more knowledge and they probably had from let’s say like a neurologist or like what they sometimes look up online or just looking from like TV shows and peers.

Can you walk us through the key services, resources, or guidance you offer to individuals and families affected by epilepsy? 

I share information from resources and websites like The Epilepsy Foundation, Epilepsy Action, and Epilepsy Alliance. Unlike other content creators, I share stories of the unknown or crime cases/epilepsy-related laws, which are not discussed commonly on the epilepsy circuit. Sometimes personal experiences help give hope to epileptics and their caregivers, letting them know that it will get worse, but there’s a light at the end of the tunnel. With the criminal justice aspect, I share medical advice, medical information relating to seizures and epilepsy, like a Supreme Court ruling or someone suing a neurologist for medical neglect. Another thing I post videos and inform others about is stories of known figures, advocates, and seizure-related death. Also, people can message me with any epilepsy-related experiences or any questions they have, which helps people express their concerns without judgment or relief that they have someone they can talk to about their experiences. 

What common misconceptions about epilepsy do you aim to correct through your work?

The misconception that all seizures occur when a person falls on the floor, or when flashing lights are present. These misconceptions are because of the media, especially from TV shows and movies, where people commonly see tonic-clonic seizures from flashing lights, or are assumed to be due to religious purposes. These portrayals increase the stigma around Epilepsy and make it harder for people to tell their story or ask questions. 

Truth is, there are more than 30 types of seizures out there, and some are not even on medical and epilepsy-related websites. Some neglected seizures, including non-epileptic seizures like Functional Neurological Disorder. In truth, less than 5% of people have photosensitive epilepsy, and most cases are caused by brain injury, stroke, or an unknown cause. 

I plan to use my platform to address the discrepancies and my voice to spread accurate epilepsy information to my audience. I will be doing so with content from my videos, the newsletter, and giving out resources for others to get the assistance and support they need. 

What is one transformational story or moment that reminds you why your advocacy is important?

Throughout my five years of content journey, I have had several discouraging moments, which can be draining, especially the continuous ones from the community I am trying to advocate for. Every time I had a discouraging moment, something incredible would come along, or something like a sweet comment from someone would give me the boost of confidence I needed to keep going. I’d say recently that I posted a video, and I explored showing vulnerability, which, if anyone knows me, I am not the most open person. Multiple people thanked me for sharing my experience, letting me know I am not alone in my experience. I shouldn’t make comments my motivator, but I’ve been going through grief too, so I’ve just been not sure about myself in my post in my content, so seeing comments that I am still making a difference, and the paranoia is all in my head.

How can people reach out, connect with you, or get involved in your mission?

People can reach me at my email here. You can also follow me on TikTok @diaryofanepileptic, and my YouTube channel, Diary of an Epileptic.

Follow me on Instagram for more info!

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