LONDON To anyone else, it was just an ordinary day. But to me, it felt like the end of the world. Or my world, at least.
There I sat 16 years old and full of hope in the neurologists office, waiting to get the results of months of tests and scans. What was this thing inside me that had caused me to lose consciousness at the kitchen table and fall to the floor one night in December the night I had my first ever seizure?
I have no memory of the events that happened that night, but I later found out that when I opened my eyes in the ambulance I didnt know my own name, and I didnt recognise my own mother whose face was anxiously hovering above mine.
Months later in the neurologist’s office, I was told unequivocally that I had epilepsy a neurological condition that causes repeated seizures. And with the utterance of one eight letter word, my whole life changed.
Denial and shame
My first reaction wasn’t just to dismiss the diagnosis I outright rejected it, refusing to even utter the word epilepsy out loud. In hindsight, I know my refusal to accept the diagnosis came largely from a place of shame. And that shame had come from the stigma attached to the condition.
Throughout my childhood and adolescence, I’d heard my peers flippantly use the term “epilepsy” in jest. “You look like you’re having a epileptic fit,” friends would joke when someone did something they deemed unusual. My anxieties about becoming the butt of playground jokes about epilepsy something I’d witnessed throughout my school years made me want to conceal my diagnosis from my peers indefinitely.
As I began to have more seizures over the next few years, I knew I needed to accept this diagnosis if I were ever to learn how to live with a condition that isn’t always visible to the people around me.
There are multiple forms of epilepsy, which can affect people in many ways. I was diagnosed with “primary generalised epilepsy” and my seizures take the form of “generalised tonic-clonic seizures”, which cause a loss of consciousness and violent muscle contractions. When I regain consciousness from these seizures, I have no recollection of the previous 24 hours. I often have to look through photographs to see what I did the day or night before. Afterwards, my tongue is covered in bites and bruises because my body instinctively bites down on it to prevent me from swallowing my tongue. For days afterwards, my whole body aches from the impact of the convulsions on my muscles.
For me, one of the worst parts about waking up from a seizure is seeing the terror and concern on the faces of my friends and loved ones; something which makes me apologise profusely for the worry I’ve caused them. The shock of each seizure makes me afraid to go to sleep after it’s happened because I’m terrified that I might not wake up.
Talking to other people
It’s hard to convey this information to anyone without sounding melodramatic.
In those first few years, I told my friends, family, classmates and colleagues about my epilepsy and instructed them what they needed to do in the event of a seizure. I didn’t feel the need to talk about my condition all the time, because in all honesty I wanted to talk about the books I’m reading, my love life and social life.
As I began to tell myself that my condition was now a part of my life, I also knew I didn’t want to be defined by it and I certainly didn’t want any special treatment.
Perhaps my reluctance to have my condition dominate all of my conversations was responsible for the countless times friends and family members said: “Yeah, but you don’t really have epilepsy, though”. I couldn’t help but feel that people thought that I was making up the fact that I had this condition, that it was all just a ploy for attention and pity. It was not.
Because I was having tonic-clonic seizures I also wasn’t legally allowed to drive. This was frustrating, particularly when I lived in rural England and my social life depended on travelling by car. “Sort it out!” friends would say time and time again. “Seriously, I don’t understand how you can’t drive,” others would say. If my frustration at the situation wasn’t enough, the hidden nature of my condition and the fact I wasn’t having daily public seizures meant I had to keep reminding people about the reasons why I wasn’t driving.
I have grown to understand that these comments don’t come from malice, but rather a lack of understanding caused by the stigma attached to talking about epilepsy and what it really means. Many people have told me they know very little, if anything, about it which is due to the lack of information out there.
The road to acceptance
When my mother began to read up on the condition I became aware of just how common epilepsy is. In the UK, almost one in every 100 people has the condition which equates to one percent of the population. I couldn’t help but wonder why more people weren’t talking about a condition that is so prevalent.
This knowledge helped me realise I wasn’t alone. Epilepsy isn’t rare and didn’t make me any more unusual than my peers. I began to feel a little bolder when telling people that I have epilepsy. Why shouldn’t I feel comfortable talking about a part of my daily life?
There are moments when bringing up my condition still feels like a challenge and a worry. When I’m dating someone, I’m terrified to bring up my condition because I’m terrified they’ll somehow see me differently. That’s the stigma coming through once again. Same thing happens when I start a new job and I have to explain to my boss and co-workers what to do in the event of a seizure.
While I’ve experienced some difficulty in getting people to understand my condition and what it entails, I’ve also been really blessed with the love and support from the people around me. My journey to self-acceptance has been helped along by the unconditional acceptance I’ve witnessed from the people in my life who’ve witnessed me having seizures.
12 years on from my diagnosis, I’ve adapted my lifestyle to try to avoid situations that could cause me to have seizures. It took time to learn first-hand what does and does not cause me to have seizures, because the condition varies so much from person to person. While these changes felt frustrating and unfair to begin with, they now feel completely normal to me. Ensuring I get enough sleep and making sure I take my medication at the same time each night are a couple of the things that are essential in maintaining my neurological health.
Dismantle the stigma
From an outsider perspective, seeing someone popping an unfamiliar-looking pill can lead to all sorts of questions. And, if I’m on a night out with people I don’t know very well, being the first to leave often results in assertions that I’m rubbish and no fun. These comments might have bothered me five years ago, but now I just can’t be bothered to pay heed to comments like these.
Living with an invisible illness isn’t easy, but over time I’ve found it easier to talk about my condition. I know that by looking at me, it’s impossible to know that I have epilepsy. I also know that the persistent stigma surrounding the discussion of neurological illnesses not only makes talking about the condition frightening, it also means that there is a widespread lack of awareness about the condition.
Only by talking openly about illnesses be they invisible or not can we begin to dismantle the stigma surrounding neurological disorders. It’s taken me a long time to find the courage to talk to people about the condition that affects me, but I no longer feel shame when I discuss it.
Conversations lead to awareness, and awareness breaks down stigma. After all, my illness might be physically invisible, but it should by no means be invisible from society.