One of the hardest things about living with epilepsy isn’t just the seizures themselves—it’s the fear that comes with never knowing when or where one might happen. And for me, the fear of having a seizure in public has been one of the most challenging parts of this journey. It’s a fear that lingers in the background, sometimes whispering, sometimes shouting, sometimes showing up on a day when I least expect it. For a long time, this fear controlled my life more than the seizures did, and learning how to cope with it has been a slow, personal, and surprisingly transformative process.
In the beginning, the fear made even simple outings feel complicated. Going to the shop, meeting a friend for coffee, stepping onto a bus—things that used to feel normal suddenly felt heavy. I’d find myself scanning every environment without even realising it: Where could I sit? Who would notice if something happened? Would anyone know what to do? The world, which had once felt open, started to feel smaller. I wasn’t avoiding life on purpose—I was protecting myself the only way I knew how. But looking back, I can see how much that fear was shaping my decisions and shrinking my confidence.
One of the first things that helped me cope was acknowledging the fear instead of trying to hide it. I used to think admitting it meant I was weak, but the truth is, pretending I wasn’t scared only made the fear louder. When I finally allowed myself to say, “Yes, this scares me,” it opened the door to actually dealing with it. I started paying attention to what exactly frightened me: Was it the loss of control? The possibility of being judged? The physical vulnerability? Once I understood the layers of fear, it felt less like a fog and more like something I could gently work through.
Another thing that made a huge difference was preparing myself with small safety steps that brought me comfort. I began wearing medical ID, even though at first it made me feel like my condition was on display. Now, I see it as reassurance—quiet, practical protection that doesn’t interfere with my day. I also set up emergency contacts on my phone and talked openly with a few trusted friends about what to do if a seizure happened. Those conversations were uncomfortable at first, but they changed everything. Knowing that even one person understands what to do felt like armour I could carry with me.
Slowly, I also learned how to ground myself when the anxiety started creeping in. On days when my mind would jump to the worst-case scenario—What if it happens at the shop? What if it happens on the bus?—I would stop and take a breath. I’d remind myself that I’ve handled tough moments before. I’d remind myself that most people are kinder than we assume, that strangers often step up in moments of need, and that a seizure happening in public wouldn’t define me. It took time, patience, and a lot of practice, but grounding techniques helped me soften the fear instead of letting it control me.
One of the biggest shifts came when I started celebrating the small wins. Going out for a short walk without overthinking it? That was a victory. Sitting in a café for ten minutes longer than I planned? Another win. Taking the bus again after avoiding it for months? A huge step. Each of these small moments helped me rebuild trust in myself. They reminded me that while the fear is real, so is my capability to move through life with courage.
Talking to other people with epilepsy also helped in ways I didn’t expect. Hearing someone say, “I feel that way too,” lifted a weight off my shoulders. It’s amazing how much comfort there is in knowing you’re not the only one fighting the same quiet battles. Through conversations, messages, and shared stories, I realised fear is a normal part of living with epilepsy—but it doesn’t have to be the loudest part.
Today, the fear hasn’t disappeared completely—and honestly, I don’t expect it ever will. But it’s quieter now. It doesn’t stop me from living my life. Instead of avoiding the world, I’ve learned how to move through it with awareness, preparation, and a softer kind of strength. I still have moments when the fear whispers, but now I have tools, understanding, and confidence that help me answer it with calmness rather than panic.
Most importantly, I remind myself that having a seizure in public wouldn’t make me a burden, a failure, or an embarrassment. It would just make me human. And being human means sometimes needing help, sometimes facing fears, and sometimes showing incredible resilience without even realising it.
If you’re living with the same fear, I hope you know you’re not alone. Your fear doesn’t make you weak—it simply shows that you care about your safety and your life. And every small step you take to move forward, even when you’re scared, is a sign of strength that deserves to be recognised.
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