Epilepsy Warriors: Our Bond on Social Media

July is Disability Pride Month. Sheila Johnson is a knowledge translation specialist at the ICI. The following blog post was written by Sheila.

I’m an Epilepsy Warrior. It’s an exclusive club. I’m proud of my club, but I hope you never join.

We fight around the clock, without respite. It’s a relentless battle where maintaining our status quo is a constant struggle. Living like this is tough. Our situation can shift unpredictably; you could be free of seizures at 10 am, only to be besieged by them at 10 pm.

When I first received my diagnosis in my 30s, I faced a five-year struggle to get a proper diagnosis and then two more years to find the right medication and dosage. I fought to hold onto my job and financial independence. I’ve (mostly) been seizure-free for 16 years. Still, there’s a persistent worry underlying every decision I make, whether it’s skiing, international travel, or enjoying a fancy meal. The unpredictability is always there, lurking in the background.

Epilepsy is characterized by recurrent seizures stemming from abnormal brain activity. Beyond seizures, it can influence cognitive functions, mood regulation, and behavior, varying in severity and impact from person to person. I combat symptoms and endure side effects. I experience tip-of-the-tongue syndrome, struggle to articulate abstract thoughts, and grapple with decision-making. I have bad short-term memory. I have bad short-term memory.

And insurance companies…need I say more?

In the early days, I traversed this battle alone. I didn’t know anyone with epilepsy, and while my family is supportive, they can’t truly understand. Doctors recommended connecting to advocacy organizations and joining support groups, but that takes effort and energy that some of us just don’t have, especially at the beginning.

I found an ally in social media. It has become a place for warriors like me to develop bonds forged in shared struggle and mutual support. Through this interaction, I no longer feel isolated in my journey. Now, I have a network, thanks to Instagram.

I connect through hashtags like #EpilepsyWarriors, #EpilepsyJourney, #EpilepsyStrong, and #EpilepsySucks. I follow advocacy organizations like @epilepsyfdn and individuals like @jacksmom, @addies.answers, and my favorite, @epilepsy_memetherapy.

On social media, we have found a place to commiserate with each other, sharing our daily struggles and receiving much-needed empathy and understanding. We complain about the side effects of our medications, vent about the unpredictability of seizures, and share outrage over societal stigmas. For us, commiserating means finding comfort in knowing we’re not alone. We share our frustrations about the inability to pinpoint the cause of our epilepsy and the exasperation when doctors don’t listen to us.

Empathy is crucial in our community. We share our experiences and emotions, knowing others genuinely understand and share our feelings. This deep connection helps us feel less alone in our journey.

When policies, media portrayals, or societal attitudes provoke our anger, sharing this outrage together strengthens our sense of unity. It helps us realize we’re not alone in our frustrations and gives us a collective voice. We stand together, advocating for better understanding and treatment.

We mourn together, whether it’s the loss of a fellow community member, a missed opportunity due to our condition, or the loss of a sense of normalcy. Mourning together provides a space for collective healing and support.

We find humor in our experiences, like the time I got cement stuck in my hair during an EEG — this helps lighten the mood. Laughing together helps us cope with the stress and find joy in everyday moments. Humor becomes a coping mechanism, making the tough times more bearable.

Most importantly, we proudly share our accomplishments, milestones, and successes, knowing we are among others who genuinely understand our journey. Whether it’s a year seizure-free, a new job, a creative project, or a personal victory, sharing these moments brings positivity and hope, strengthens our community, and bolsters our resilience in the face of challenges. Seeing each other succeed inspires and motivates us.

The journey of an Epilepsy Warrior is marked by relentless battles, unpredictable shifts, and persistent worries. Yet, within this struggle lies a profound strength and resilience that binds us together. Through the power of social media, we have found sanctuary, solace, and solidarity among fellow warriors who understand our journey intimately. Our collective experiences, shared struggles, and mutual support have forged an unbreakable bond, reminding us that though epilepsy may challenge us, it will never define us. As we continue to navigate this journey, let us take comfort in knowing that we are never alone, and together, we are stronger than the obstacles we face.