Living with Epilepsy - I can make a difference...and so can you!

How volunteer work has brought me closer to my friends and has given me a new sense of purpose

Jenna Dalton at the Young Adults with Epilepsy Table

Epilepsy hasn’t always been something I’ve been comfortable sharing because I haven’t always had the best experiences when opening up about it. Whether it be rude comments, discrimination, being left out, the general stigma…I’m sure many of you can relate. But as I have gotten more into volunteer work with epilepsy and have met more people with epilepsy through Young Adults With Epilepsy, I have begun to feel less embarrassed about my diagnosis. 

My journey with epilepsy started about a month after my 16th birthday back in 2014. I just woke up one morning and had a seizure. After doing lots of tests (MRIs, EEGs, blood tests…you guys know the drill) I was diagnosed with Juvenile Absence Epilepsy. It was quite a shock to me and my family. No family members on either side of my family have any kind of seizure disorder, I hadn’t had any kind of head injury, brain tumor, stroke, or any of the other typical causes. And now we had to deal with a chronic illness that we didn’t know much about, while preparing to move to Brazil. This diagnosis didn’t exactly make the move any easier. And with my main triggers of seizures being inadequate sleep and stress, that didn’t make the move, high school, or college, any easier as well. Between the seizures, the anxiety around seizures, the tests, the trial and error of finding the right medication, the side effects of the medication, and many, many more elements that come from having epilepsy, I have often felt every day like there’s no hope for things to get better. For so long I have felt like a burden to others due to things like needing a ride to places because I can’t drive because of epilepsy, needing help with insurance, medication, needing help recovering after I have a seizure…it has been really easy to feel discouraged. Especially since I don’t have any friends or family that have epilepsy which made me feel really alone in this battle - until I started volunteering with the Epilepsy community. 

My first time volunteering for something to do with epilepsy was last year, at The Epilepsy Foundation’s Walk to End Epilepsy in Utah, where one of my friends and a couple of family members came with me. When I was there, surrounded by people like me, I felt like I wasn’t alone in this fight anymore, and I started to feel more comfortable sharing that I have epilepsy. So this year, I wanted to make it even bigger! I texted a friend to invite her to the walk, who then brought it up in a church meeting, and then they announced it at church, made posts and put it on our church socials, and more! Between spreading the word myself, and through the friends and family members that did on my behalf as well, on June 15th (the day The Walk to End Epilepsy took place this year) I had 25 people show up and raised $1,465, making me the second highest fundraising team this year! 

Epilepsy Warriors!!!

Beyond that, I didn’t just go for myself this year - I set up a table for Young Adults With Epilepsy. I first heard about this wonderful nonprofit through a post from The Cameron Boyce Foundation, and after my first peer support group call, I immediately felt so heard and supported! I had never felt so understood before. And with every weekly call and every workshop, I fell more and more in love with this group. I want every young adult with epilepsy to have that same feeling of togetherness that I have felt. So I started talking with some of the leaders of Young Adults With Epilepsy, and asked if they’d like me to set up a table at The Walk to End Epilepsy to raise awareness of this support group, and they said they’d love that! They sent me a table cloth with the organization’s name on it, tri-fold brochures about it, business cards with my name on it, various purple temporary tattoos, and purple flags. And boy were those temporary tattoos a hit! We had so many people come up to the table to get one a tattoo and a flag, that we were busy the entire time! I didn’t even get time to take many photos or videos of it because of how busy we were! The temporary tattoos were especially a hit. And since it takes about 30 seconds to a minute to get them to stick on to the skin nicely, we had a captive audience. It gave us a great opportunity to talk about what this group is all about! So if you have some kind of merch like that, don’t just sit there while you’re applying the tattoo - talk to them! Tell them about the company or organization you’re with!

At the end of the walk, a man who works for a medical device company came up to me to learn more about Young Adults With Epilepsy, and said they want to discuss funding and support for our group and connect me with all of the local epileptologists! That interaction with a company like that is a connection that I don’t think I would’ve made so easily, if at all, if I hadn’t been volunteering at the walk. And that wasn’t the only opportunity to share about Young Adults With Epilepsy if I hadn’t been volunteering there!

When I had my next appointment with the doctor I see for my epilepsy, I told her about the walk and what I was doing with Young Adults With Epilepsy, just as part of a catch up conversation in the appointment since I hadn’t seen her in a few months. She thought what I did was great, and said that there are other patients at the hospital who would love to join a support group! She suggested I talk to the hospital about putting the brochures in the doctor’s offices just like the brochures on medical devices, surgeries, etc. That’s something I wouldn’t have thought of doing otherwise. Just through sharing what I was up to in my life, I found another way to spread awareness about this organization that I’m so passionate about! So if you ever want to do some sort of volunteer work with epilepsy, don’t be afraid to share that you’re doing it! IT might seem scary at first because you don’t know how people are going to react. But I’ve found that when you have something you love, the people in your life want to support you and your dreams. 

While the walk I went to in 2023 was great, this year was even better. I have experienced so many benefits from joining this organization, working with them, going to The Walk to End Epilepsy, and volunteering there. Through Young Adults With Epilepsy, I have found a new sense of purpose and belonging both through joining the support group and spreading the word about it. It has brought me closer to my friends and family, and it showed me that I have a bigger support system than I thought. So many people showed up, donated, and had genuine questions for me about my condition, my seizures, what to do if I have a seizure, and more. It also made me feel more confident in sharing my story. I don’t think I would’ve felt comfortable writing something this personal and this public, even just a few months ago. But this organization has changed my life for the better, forever. I hadn’t considered volunteering in the epilepsy community until this year, and I can’t recommend it enough! It has been so rewarding! So if you have the opportunity to attend a walk and maybe even volunteer at one, you should do it! Meeting other people like me helped me feel more supported, welcomed, and truly part of a great community of amazing, strong people. 

I can’t change the fact that I have epilepsy, but I can change what I’m going to do with it. I can be a part of something bigger than myself. I can help people who are also struggling with this condition. I can help raise money to find a cure for epilepsy, to end stigma, and more. I can make a difference. And if I can do it, so can you! We can do this together! I’m sure I’m not the only person with epilepsy who has felt alone due to this condition, but no one should ever have to feel that way. Let’s step up together and help make sure that no one feels alone.