Living With an Invisible Illness
Last updated: December 2022
I am what many would call a statistic. Many of you, your friends, and your loved ones are too. What category am I referring to? The category that wasn't of our own choosing, and truthfully, no one wishes to be part of. However, we live with it each and every day. It's often not discussed or shared as many people live in secret out of fear of judgment. And if it is talked about, it's not enough.
You're thinking, what is this? It is called an invisible illness or non-visible condition. And, yes, I fall into this category too. As someone who appears very confident and outspoken, friends and colleagues who I share my diagnosis and journey with were quite simply dumbfounded that someone like me – who appears very healthy and living her best life – has epilepsy.
My symptoms may be invisible, but I'm not
Although we don't have the exact number – because people often stay silent – it is believed of those reported globally, 1 in 7 people live with a disability, and of those, 80% are invisible, equating to 1 billion people who are living with an invisible illness. These people are your family members, friends, coworkers, and may even yourself! We are not just a statistic. We are people who must work through the challenges in our daily lives and in the workplace.
What does it mean to have an invisible illness or non-visible condition? I can list just some of these, but I can also tell you, as someone who is part of this unwanted "club," no matter how many times I share my journey, I am still fearful of judgment. As the proverbial "cherry on top" of having a diagnosed invisible illness, these conditions can also bring about other issues such as depression, anxiety, and even chronic pain not related to the original diagnosis.
There is often judgment surrounding what we don't know or don't understand, right? So, awareness and knowledge are key. That's why I share my journey with you. And because without a doubt, someone, somewhere right now as they read this needs to hear: you are not alone. I am right here with you as many others are. We get it. You are never alone. Ever.
As a person with an invisible illness, my mission, purpose, and passion are to talk about it so that I can bring awareness and be the voice of so many who have lost theirs. I want to help people with epilepsy and other invisible conditions overcome their obstacles and navigate their lives through our shared challenges.
My journey with epilepsy
Just a few years ago, out of nowhere, I was diagnosed with epilepsy at the age 50. I couldn't believe my diagnosis. Say, what? Epilepsy? "What do you mean? I have had epilepsy my entire life? How is this even possible? How can I just be being diagnosed with a condition I supposedly had my entire life?" I asked the doctor. "I'm 50!" Oh, and by the way, "What the hell is epilepsy?" I asked.
I challenged each word and every sentence the doctor had to say. "Are you sure...?" I questioned. I thought now that I was diagnosed it was indeed "a sentence." How in the world was I going to continue to live my active lifestyle? How would I go on?
I am an epilepsy warrior
I then quickly changed my mindset and realized a diagnosis of epilepsy does not mean "a sentencing," but rather, an understanding of how each of us with an invisible illness must learn to navigate life and situations in a new way. I began to own my diagnosis, not allowing this unwanted intruder to define my life. I began to eat, drink, and sleep epilepsy – learning all I could learn about it and how our brain functions. I became obsessed, so to speak, with my brain.
Fast forward, now a few years later from my initial diagnosis, I couldn't be more accepting and grateful that I have epilepsy. Heck, a few years ago, I didn't even, know what epilepsy really was! I knew what seizures were, but not the true definition of epilepsy and how my life would positively – yes, positively – change forever.
Epilepsy can be completely invisible
Did you know you could have epilepsy and not even know it? That's how silent it can be. Depending on the types of seizures you experience, you could go on for years without knowing you're having them. In order to be diagnosed, your symptoms plus how and when they present must align with a knowledgeable medical professional who can connect all of the dots.
I am compelled to not only share my story of adversities for the benefit of others but to also be the voice of so many who have lost theirs, for fear of judgment, wrong perceptions, and all that goes along with having an invisible illness. You see, I'm not just a statistic.
Having an invisible condition, I can tell you truthfully, can be a very lonely feeling. I get it! It's as if no one understands or can relate to you, regardless of how much support our loved ones may offer. The reality is, so many can relate.
Invisible conditions are so common, yet we are often so afraid to speak of them. Why is this? Why do we create an environment that keeps someone from sharing their truth? Their struggles? We all have struggles. We should be coming together with understanding, empathy, compassion, and the willingness to learn about one another – including someone's invisible illness. This creates a safe place for all to become their best selves.
Shining a light on what's kept in the dark
Until I began my personal journey with epilepsy, I truly had no idea how many individuals are living with chronic illness and the impact it has on their life. I have always had the desire to use my personal adversities to provide courage, hope, and strength to those who feel alone, unworthy, and scared. I can reassure you: you are not alone, you have nothing to be afraid of, you are not less than others, and you are not just a statistic.
We can either choose a victim mentality or a warrior mentality. The choice is always ours. As fearful as I am revealing my epilepsy, my voice is for the voiceless. My voice is for all to understand, be heard, and shine the light on what is often put in the darkness.
If this article gives hope to one person, then in my eyes, I've given hope to the world. And this, right here, is where I am finding my calling. My passion is to support those who don't feel supported.
What gives me continual faith in sharing my voice is seeing change within the invisible illness communities like epilepsy. I admire anyone that can be vulnerable, real, honest and authentic. I enjoy listening to those who have influenced these changes by sharing their stories. It does make a real difference. Perhaps if we could lead with more understanding and empathy towards one another, there would be less chaos and misunderstanding in this already chaotic world we live in. Listening more while talking and judging less. When we listen, we learn.
"You don’t look like you have epilepsy!"
Often, I hear, "You don’t look like you have epilepsy!" or "You don't act like you have epilepsy!" and "Can you drive?" These ongoing comments push me to advocate even more passionately for those who live with epilepsy. Personally, I don't mind the questions, in fact, I encourage them. Open dialogue and communication is the only way one can learn about invisible illnesses and their impact.
Epilepsy, I can assure you, is not what you think. It is not always dropping to the ground and convulsing. Yes, some have this form of epilepsy, but not the majority. My epilepsy is quiet, silent, and only I know when my left brain is battling my right brain. Trust me, it is quite annoying, firecrackers popping in my head nonstop from time to time, for a short amount of time (maybe 6/7 seconds). My symptoms don't last long, however, it is still an inconvenience and very silent to the world.
Having a sense of humor about my epilepsy
I often joke when it happens, and if I am in a safe place (meaning with people I trust), I will say, "I'll be right back in about 6 seconds." To many, 6 seconds is short time period, but for me, it's forever long. So, in a perfect world, it would be great if I could look at anyone at any time and say, "I'll be right back, in about 6 seconds!" and when I do come back, it's as if I never left. And there was just that understanding and our conversation could continue as if there wasn't that pause.
Having a sense of humor is a must when having an invisible illness. Seriously, if we can’t laugh at ourselves, how can we find humor in anyone else or life in general?
What can we do about invisible illness awareness?
When it comes to building understanding, this applies to everyone in our lives. Our friends, neighbors, and those we encounter in our daily life.
The workplace, in particular, is where many of us spend most of our time. Whether it's in a physical place or connecting remotely. To elevate satisfaction with workplace culture, happiness, and retention, it would be amazing if workplaces, created a "safe space" for everyone to feel validated and free to share about their challenges and openly discuss their invisible illness. Organizations are known for creating and building success around their customers by leading with empathy and understanding. Can you imagine how organizations could become even more successful by having the same mindset around their employees?
Something as simple as "How can I help?" or a simple "What do you need?" can make all the difference in the world for someone who is living with an invisible illness. Leading with understanding and empathy is one of the greatest gifts an organization can give its team members. Just as the same can be said for our relationships outside of work.
We are in this together and together we can make a difference. Listening is our greatest strategy. There is so much we can learn by sitting back, observing, and listening to those around us. By doing so, we create a culture that allows others to become the best version of themselves. And this is my ultimate passion.
I hope that I have been able to shed some light and awareness on epilepsy and all invisible conditions. And I encourage all of us to continue with this dialogue – openly and honestly.
Is increased screen time a seizure trigger for you?