Don’t forget to take a look at Part 1 of our interview, where Jessica discussed her trigeminal neuralgia journey, what this condition is, and why she decided to start the Getting On My Nerves 5K!
Developing a 5K Event
After her diagnosis, Jessica became increasingly dedicated to making a difference – not only for herself, but the rest of the trigeminal neuralgia community, who she refers to as “trigeminal neuralgia warriors.” Prior to receiving her diagnosis, Jessica was incredibly active. She loved – and still enjoys – running 5Ks with her husband; they’ve been together for 10 years and have cultivated a genuine love for doing these activities together.
So when Jessica decided to make a change in the TN community, and enhance support, awareness, and connection, she leaned into what she knows and loves – the 5k. She shared:
“I’m getting chills just thinking about it. I started planning Getting on my Nerves in August 2021 and the free 5k took place in October. I thought it would be super popular during the pandemic, and figured my friends and family would sign up. But the response was immense. We had 262 participants across the globe and raised over $6,000 for the Facial Pain Research Foundation.”
Jessica chose October to hold the 5k as October is Facial Pain Awareness Month – and October 7th is considered to be Trigeminal Neuralgia Awareness Day.
To Jessica, the response was the most powerful part of the event. She realized that there were so many people with trigeminal neuralgia who were looking not only for support and awareness, but to be seen and heard.
Once she began setting up the 5k, she also began her Getting on my Nerves Instagram account to help raise awareness. Through this account, she also decided to begin sharing stories from those within the trigeminal neuralgia community to show how people live with this condition. She shares:
“We function just as well as anyone else, just in more pain. If you take a look at the Warrior Stories I have collected, I have spoken to over 100 people about their experiences, what we all have in common, and how much we’ve been searching for a change. It has been mind-blowing to open that community and show people that they aren’t alone.”
Preparing for Year Two
This year, the registration for the free Getting On My Nerves 5k began on June 1st, with the race taking place for the entirety of October. Jessica explains that this isn’t a traditional 5k. She shares:
“One of my biggest triggers is the wind and weather. So going out on any specific day to do a 5k is nearly impossible for me; I’d need it to be sunny and 75 degrees with no wind. I decided to have this 5k take place for the entire month so that it can be inclusive and accessible for all people. Anybody can join in regardless of accommodations and mobility needs. If you do just 200 steps a day for 30 days, you can accomplish this. I want to meet people where they are and help spread awareness and education around trigeminal neuralgia.”
To Jessica, the most important part of running the 5k is to help people understand that they are able to do whatever they put their minds to. There are people with TN who ride ATVs, who do yoga, who produce movies:
“Name a job and there’s a TN warrior who does it. Just connecting with others has not only changed my life, but changed the lives of all of these people.”
So how does she see Getting On My Nerves progressing in the future? One day, she would love to host a live 5k where everyone within the community can come together and spread awareness. She doesn’t know what the timeline looks like yet, but her ultimate goal is to ensure that the community can benefit as much as possible.
Final Words and Advice for the Trigeminal Neuralgia Community
In addition to running the Getting On My Nerves 5k, Jessica also hopes to provide comfort and support to others with trigeminal neuralgia through her social media presence. At first, she found that social media was somewhat detrimental to her wellbeing:
“Before Getting On My Nerves, I felt so alone. I didn’t know anybody else who was suffering with trigeminal neuralgia. That isolation can be so detrimental to mental health, healing, learning, and recovery. I began joining Facebook groups, but I found that they were often very dark and depression. When I was having moments of suicidal ideation, going to those support groups made me feel hopeless. If there were all of these people ready to give up, then what was I doing? Starting my own supportive community was a step towards hearing.”
Through Getting On My Nerves, Jessica has been able to cultivate a strong community where she is able to offer tips and advice to those who are newly diagnosed with trigeminal neuralgia. She urges people to check out her Instagram account for helpful infographics, to learn about the 1-on-1 “Warrior Chat,” to learn more about the Warrior Group Chat (which offers support for small groups of up to 12 people), and to better engage with conversations around sex, relationships, cannabis, or other topics that are considered “taboo” by bigger organizations.
The community is imperative to finding one’s way while navigating a rare condition. And this, Jessica says, is why she advocates for people to search for help – even if it isn’t through Getting On My Nerves. She shares:
“If GOMN isn’t the place for you, then I still encourage you to do research and connect with other warriors. We’re still learning. Something that may work for one person may not work for another. But together, through GOMN and otherwise, we can begin working towards positive, actionable change for everyone.”
