Ana contacted us because she wanted to share her story. She said that, as a Black African woman, she is especially keen to help highlight how culture, identity, and systemic barriers shape the way epilepsy is understood and treated. We thank her for sharing her story and hope, as she does, that it will help others.
I’m a Higher Assistant Psychologist and planner by nature. I’ve lived with epilepsy for most of my adult life, though it took over a decade to receive a diagnosis. My hope in sharing this is simple: that someone else might feel seen, understood, and quietly validated.
My first seizures began in my early twenties, though I didn’t know that’s what they were. They were brief, disorienting episodes — moments where time slipped sideways. I’d lose track of conversations, feel a strange pull in my body, and then return, unsure of what had just happened. Because they didn’t look like the seizures I’d seen on TV, I didn’t have the language to describe them. I carried on, quietly adapting, not yet knowing I was living with epilepsy.
I sought help early, but describing what I was experiencing felt impossible. As a psychology student, I tried to make sense of it using clinical language. I even wondered if it might be psychosis. Yet when I spoke to GPs, the episodes were often labelled as panic attacks or stress responses. Over the years, I was treated for anxiety, IBS, vitamin deficiencies, and exhaustion. I tried each suggestion while knowing something deeper was being missed.
In 2023, everything shifted. I had an episode at work that my manager witnessed and described as a seizure. She offered to write down what she saw and asked the other managers to do the same. Their emails became a quiet act of advocacy. She encouraged me to take them to my GP, knowing I’d been dismissed before. I did. At the appointment, I told the clinician I thought I was suffering from seizures. She giggled at first, but as she read the emails, her face changed. “I’ll be referring you to neurology,” she said. That moment — from disbelief to action — was one of the most validating of my journey.
Looking back, the signs were there. By 2017, I was struggling with memory and word recall. I’d forget names mid-sentence or lose familiar phrases. I was sleeping more, feeling foggy, and constantly fatigued. My iron levels were so low I needed a blood transfusion, and I had B12 injections to help with dizziness. However, because my symptoms didn’t fit the typical image of a seizure, they were attributed to stress or burnout. That delay shaped how I now advocate: gently, but persistently. Epilepsy doesn’t always announce itself loudly. Sometimes it whispers through confusion, fatigue, or a quiet sense that something isn’t right.
My diagnosis — temporal lobe epilepsy with focal aware and focal unaware seizures — came without a known cause. That’s true for nearly half of us living with epilepsy. My MRI showed subtle swelling in the left amygdala and changes in the right, with positive GAD antibodies in my spinal fluid. These findings may point to autoimmune encephalitis, though nothing is definitive. I’m now entering a treatment trial, starting with medication and possibly moving toward plasmatherapy, depending on how my symptoms respond. The goal is to find what works best and establish a regular care plan.
I’m now working as a Higher Assistant Psychologist, with hopes of pursuing doctoral training in clinical psychology. Epilepsy has affected every part of that journey, including my studies and early attempts at applying for the doctorate. There were times I doubted whether my story belonged in clinical spaces. But it does. Epilepsy has taught me to advocate with clarity and care. If you’re living with it, I hope you feel seen here. Your story matters. And you’re not alone.
