Living with a disability feels like carrying an invisible weight that others can’t see. While the challenges are ever-present, the hardest part isn’t always the physical toll or the limitations; it’s the isolation. It’s the moments when you’re pouring your heart out, trying to explain your struggles, and the person across from you nods absentmindedly, their mind clearly elsewhere.
You wonder: Are you hearing me? Are my words even reaching you? It’s as if your voice gets lost somewhere in translation, diluted by misconceptions and drowned out by the noise of a world that moves too fast to pause and understand.
For those with epilepsy, like me, this is a daily reality. My seizures come uninvited, disrupting my plans, my work, and sometimes my sense of self. Each one tells a story of vulnerability, yet the world rarely stops to listen. The most painful question I find myself asking isn’t about my condition—it’s about others: Do they even care to understand?
The Weight Of Misunderstanding
The frustration grows when you’re surrounded by people who think they know your story, but in reality, they don’t. “Oh, you’re epileptic? Just take your meds, and you’ll be fine,” they say, brushing off years of personal struggles with a single sentence. It’s as if they believe your disability is a switch you can turn on or off, failing to grasp the deeper layers of what it means to live this way.
Epilepsy isn’t just the seizures; it’s the constant calculations—What if it happens here? Did I get enough sleep? Is this food okay with my meds? It’s the injuries, the hospital visits, and the lingering fear that shadows every moment of normalcy. Yet, when I try to explain this, I see blank faces. Their lack of understanding feels like a barrier between us, growing thicker with every unspoken word.
The Echo Chamber Of Silence
Over time, you start questioning whether it’s worth explaining at all. Why Bother? you think. They’re not going to understand anyway. This self-silencing is a dangerous trap. It pulls you into an echo chamber where your voice bounces back to you, unheard by the outside world.
For years, I downplayed my struggles. I convinced myself it was easier to say, “I’m fine” than to confront the awkward silences and empty reassurances that followed the truth. But this approach only deepened my loneliness. The more I kept quiet, the more invisible I felt.
But invisibility doesn’t erase pain. It magnifies it. Because when no one hears you, it’s easy to start believing your voice doesn’t matter at all. And that belief? It’s the heaviest burden of all.
Finding The Courage To Speak
The turning point came when I realized that being unheard didn’t mean I had to be silent. My voice mattered—not because others always understood it, but because it was mine. I started sharing my story more openly, even with the fear of being misunderstood.
And something incredible happened: I found people who did hear me. They weren’t always the ones I expected—sometimes it was strangers, other times it was online communities or fellow individuals with disabilities. But their understanding felt like a lifeline.
They reminded me that my experiences weren’t just hardships; they were lessons, bridges to connect with others who felt unseen and unheard. My voice became a tool—not just to express my pain but to inspire others to speak up, too.
Speaking So Others Will Hear
Today, I speak louder, clearer, and with more conviction than ever. I’ve learned that being heard isn’t just about volume; it’s about persistence. It’s about finding the right spaces, the right people, and the right moments to share your truth.
For those of us with disabilities, being heard is an act of defiance against a world that often chooses convenience over compassion. It’s a way of saying, I matter. My story matters.
So, I ask you—whether you have a disability or not—to listen. Truly listen. Because when you do, you’ll hear more than words. You’ll hear strength, resilience, and the unbreakable will of someone who refuses to stay silent.
To anyone who’s ever felt unheard, know this: your voice matters. Keep speaking. Keep shouting if you must. Because somewhere, someone will hear you. And when they do, they’ll be changed forever by the power of your story.
