Edwina is part of the Epilepsy Research Institute Mortality, Morbidity and Risk theme Task Force group. At a meeting of this group, she spoke movingly about her experience of epilepsy and mental health, and her passion for raising awareness of this under-researched area. We are proud to be able to share her story to help raise awareness.
I wasn’t diagnosed with epilepsy until I was 11 years old. Before the diagnosis, I was just an ordinary child—spending my days playing with friends in the street, playing on my bike, and swimming twice a week at the local pool. Life felt carefree and enjoyable. Everything changed one morning when I was getting up for school; that was the last thing I can remember. The next moment I awoke to the blaring sound of sirens and flashing blue lights, marking my first seizure. At the time, I had no idea how profoundly that morning would alter the course of my life.
It took several years before I truly understood the psychological effects of living with temporal lobe epilepsy. As a teenager growing up in the 1990s, I experienced stigma that was deeply entrenched in fear and stereotypes. These attitudes shaped much of my adolescence and early adulthood.
My first experience at the job centre was overwhelming. The only position I was able to secure was cleaning toilets in a local residential home. While the residents themselves were kind, my time there was short-lived. After only three weeks, I was fired for having a seizure. This marked the beginning of a recurring pattern in my employment history, one that persisted well into my late twenties.
As my employment struggles continued, my friendships began to fade. I found myself unable to keep up with what my friends were doing. They had the financial stability to go on holidays, thanks to steady jobs. They enjoyed the freedom of driving, able to leave or travel whenever they pleased. Most of all, they were free from the constant urge to hide and the persistent feeling of wanting to remain invisible.
The need to hide has always had a major impact on my life. Over time, this constant urge to remain unseen led to a significant decline in my self-esteem. Feelings of terrible shame became a regular presence, overshadowing moments that should have been filled with joy or confidence. Alongside this, immense frustration grew, stemming from the limitations imposed by my condition and the overwhelming desire to avoid judgement or misunderstanding. These emotions gradually crept into every aspect of my life, shaping my interactions, choices, and how I viewed myself.
While those around me witnessed the physical reality of my seizures, they could never truly understand the relentless, internal battle I faced every day. It felt as though I was constantly treading a double-edged sword, uncertain when the next episode might occur. Questions plagued my mind: Would I fall today? Would I injure myself? Would I even regain consciousness after the next seizure?
Beyond the immediate physical risks, I was haunted by the fear of how others perceived me. I worried people would see me as simple, or worse, that they would pity me or avoid me altogether, viewing me as a burden. The desire to join the world outside was always tempered by the insistent voice in my head urging me to hide, to retreat rather than risk exposure or judgement. This internal conflict became a defining feature of my daily life, shaping how I interacted with others and how I saw myself.
There are times when I am left questioning the reasons behind the way I feel. I am uncertain whether my personality has been shaped predominantly by my experience of living with epilepsy, or whether the condition itself has exerted a direct psychiatric impact. Alternatively, I wonder if the medication prescribed to control my seizures has played a significant role in influencing my mental health. The truth is, I simply do not know the answer to these questions.
This uncertainty highlights the vital importance of ongoing research into epilepsy, particularly in exploring the complex relationship between epilepsy and mental health. It is crucial for research efforts to focus on understanding these connections and to seek out effective solutions that can improve the quality of life for those affected.
