What it's really like to live with epilepsy

THIS Monday is Purple Day, the international day for epilepsy awareness and a good opportunity to clear up common misconceptions.

So many people think they know what epilepsy is and what its limitations are. Strobe lights equal seizures, everyone knows that’s what epilepsy is, right? Wrong.

I, like many others with epilepsy, am not affected by strobe lights. In fact only three per cent of those with epilepsy are photosensitive. My triggers tend to be stress, lack of sleep, hormonal changes and alcohol consumption. Others can be low blood sugar, dehydration, general sickness and not taking medication as prescribed.

I was diagnosed when I was in Primary 7 after I had a seizure in front of my class just before my 12th birthday. That was my first stint in hospital as a result of a seizure. I stayed in for three days before being released into my new life.

I didn’t experience much seizure activity between then and my 16th birthday. I was sitting my Standard Grades that year and taking part in a school show and after a combination of stress and lack of sleep I had a seizure for the first time in years. I met with a neurologist and an epilepsy nurse and was put on medication that I will likely be on for the rest of my life.

I had just started a part-time job at the time and the managers were really unsupportive and just didn’t understand I had a condition that I had to come to terms with all over again. I was slowly shunned, and stopped getting shifts with no explanation.

That experience makes me appreciate my current job so much, because every single person in my department is so supportive, understanding and willing to help. I’ve also had unlimited support from my family and friends, who always encourage me to avoid my triggers and take plenty of time to rest in order to avoid or recuperate from seizures. Epilepsy Scotland also has plentiful resources available as and when I need support.

I do appreciate people asking about my epilepsy, and most of the time it’s out of concern and curiosity. I’m happy and open enough to talk about it freely. It’s just disappointing to hear comments like, “You aren’t affected by strobe lights? You can’t have epilepsy then.” I do often find myself correcting people who talk about “fits”. I always ask people to use the term “seizure” instead because “fit” is generally restrictive to tonic clonic seizures (which used to be called grand-mal) but there are in fact several types of seizures which happen with no obvious physical symptoms. These include absence seizures, the form of seizure I generally encounter.

I managed to secure a summer internship last year with North Lanarkshire Council, a disability confident employer, with the help of the Change100 programme run by Leonard Cheshire Disability. The internship was so helpful with increasing my confidence in the workplace and I proved to myself that I could hold down a full-time job in spite of my disability. I couldn’t fault the support I got from both my employer and the charity over the three-month placement and the months after that.

I’d love to be able to teach everyone everything that they needed to know about epilepsy, but there are so many forms that every person affected lives a radically different life. I can only ask that people practice tolerance, acceptance and understanding.

A few years ago a film called Electricity was released, based on a book of the same name. I went to see it at the Glasgow Film Theatre with my parents and was blown away by how well Agyness Deyn portrayed the protagonist, Lily, who has epilepsy. It’s an incredibly touching and honest film, with such an important focus on life with epilepsy.

Just like people with every other disability out there, we are more than our condition: we are brave, we are resilient, and we are people. I am now studying philosophy at Glasgow University and am set to graduate in June despite huge emotional and academic setbacks that are directly linked to epilepsy. I also now have two part-time jobs, which fund my insatiable hunger for travel. Next stop, Prague.

For more information about epilepsy, visit www.epilepsyscotland.org.uk