Behind the Seizures: The Hidden Reality of Epilepsy

When I was 14 I was diagnosed with epilepsy.

Growing up with various medical issues, I saw my diagnosis as something to be grateful for. An explanation for the mysterious bruises and constant headaches I’d had all my life. I didn’t realise at that point how much it would affect me.

I was told excessive tiredness, stress, and use of alcohol or drugs were to be strictly avoided to prevent seizures, and being an obedient 14-year-old, I did so. I was fortunate to have the kind of epilepsy that only troubled me once or twice a year, and I was still living under the care of my parents. I didn’t drink, me and my friends spent most of our time at each other’s houses, and life was relatively low-pressure.

It wasn’t until I turned 16 or 17 that I started to feel my condition getting in the way. My friends started going to parties, drinking, staying out all night, and begging me to come. At this stage, my stress and anxiety skyrocketed; I was constantly exhausted and nervous. I didn’t know how to explain that I was different, or why I had to say no. I began seizing every few months, missing days of school, and being excluded from activities because I was an ‘at risk’ student. I felt I was becoming invisible, whilst all too visible at once.

There are 16 million people in the UK with a disability, and 80% of those people have what is referred to as a ‘hidden’ disability. Many hidden disabilities are physically incapacitating, just not immediately obvious. Difficulty with socialising, regulating emotions, focusing, and even experiencing chronic pain, discomfort, or fatigue are just some of the issues we can face as a result of our conditions. I struggle to drink as much as others, stay awake, focus, study, and make friends all because I am constantly worried I will have a seizure. I feel like a burden, I feel scared, and unsafe, and often the laughingstock amongst even my closest friends for not being able to keep up.

Epilepsy is not the only example of a hidden disability, nor is it the most prevalent. Other examples include ADHD, autism, arthritis, anxiety, bipolar disorder, depression, Crohn’s, and many more. Whilst many associate disabilities with motor impairments and wheelchairs, mental health disorders constitute a large proportion of the invisible disabled community. Moreover, despite the rising awareness of mental health issues, getting the correct, or even any diagnosis remains near-impossible, often due to contradicting symptoms. Those with ADHD for instance, often present as having depression or anxiety and are prescribed the incorrect medication, which can worsen the feeling of being unseen or ignored.

The issues of misdiagnosis and misinformation create an obstacle that can sometimes feel insurmountable to those seeking support. For those of you who do relate, I have found that some of the loneliest, hardest parts of living with a disability are not the symptoms and side effects, but the times when I think no one empathises or understands my experience.

Of course, I know, rationally, that many people can and do understand what I deal with daily. I hope sharing my experience helps you realise that as well. You are not a lightweight, or boring or too quiet, too loud, disorganised, or annoying. You are not a risk or a liability. You are perfect. Having a disability may be a big part of your everyday, but it is barely a fragment of who you are.