Olivia Salvati, a 25-year-old paralegal and law student shares her story of being diagnosed at 11
When I was 11 years old, I was trying on a new pair of shoes at the shopping centre with my mum. The next moment, we were outside the bookshop – I didn’t know how we’d got there. It felt like time had somehow skipped forward, as if someone had accidentally sat on the remote control to my life.
This happened again. And again. Soon enough, I was at the doctor’s office and my mum explained what had been going on, listing my symptoms, which included: vacant stares, long pauses and memory loss. I was referred to a specialist, and tests confirmed there was seizure activity in my brain. What I’d been experiencing were absence seizures: brief but sudden lapses of consciousness. Everything happened pretty quickly after that. I had tests, and more tests and was told “try this medication”, or “try that one”. I felt like a guinea pig.
After my diagnosis, I noticed a change in my family dynamic right away. Everyone around me was suddenly on edge. To me it felt very weird, they constantly had eyes on me, nervously checking in. Having epilepsy meant my childhood ended quite abruptly, because I had to think like an adult – as much as they loved me, my mum and dad couldn’t fix this for me.
A few years later, at the age of 14, I had my first tonic-clonic seizure – a fit involving stiffening and jerking of the body – this is what most people think of when I tell them I’ve got epilepsy. It was a struggle getting to grips with a new element of my epilepsy, with my tonic-clonic seizures becoming a weekly occurrence. This totally depleted my confidence. Having your teachers, school friends and even your crushes see you in such a vulnerable state felt so embarrassing – even though it shouldn’t have.
I was put on to a special medication to manage my tonic-clonic seizures, but the side effects were severe and I was overcome with near-constant anger and anxiety. Balancing seizures, puberty and the side effects of the medication was tough, so I was grateful when my medication was changed. Although, it took about six months until I felt like myself again.
Annoyingly, though, as soon as one area of my life evened out, something else fell apart. At 18, I headed off to university, full of excitement for the future. But I was forced to drop out as my seizures worsened. Believing that epilepsy had put an end to my dreams, I fell into a deep depression.
Through the help of therapy, however, I learned to accept that, although I can’t change my condition, I can change my mindset towards it. Therapy – and the right medication, which has taken ten years to find – has also made my seizures more manageable, which I think shows how much your physical and mental health are connected.
Shortly after dropping out of uni, I found the strength to return and soon I’ll be a human rights solicitor. Looking back, I see that, although epilepsy is a challenge, it hasn’t stopped me from achieving my goals. I’ve arrived at every destination, just with a detour along the way.
What helps Olivia
People think that epilepsy is being triggered by flashing lights and involves foaming at the mouth – but the condition is so much more complex than these stereotypes would have you believe. My triggers are actually stress, anxiety and tiredness, so I’m more wary of my mental health and lifestyle choices than I am of flashing lights. If a friend asks to hang out on Saturday but I had a busy Friday, for example, I’ve learnt to say no and respect what my body can handle. It’s been a hard lesson to learn – FOMO is real! – but boundaries protect my health.
Self-care at work
It can be daunting to tell an employer about a health condition, but being honest with mine led us to create a care plan. Now my team is aware of how to help me if I have a seizure at work, and there’s flexibility for me to take time off when I need to recover, as seizures can sometimes wipe me out for days.
Rest, rest and more rest
There are a lot of misconceptions about invisible illnesses in general, but one that affects epilepsy sufferers in particular is how up and down our health can be. I might need to take time off work one day, but the following day I’m totally fine – other times, I might need longer to recover. After a tonic-clonic seizure, for example, I might be unable to get out of bed for a few weeks. I recently ran a marathon to support Young Epilepsy, and that was nowhere near as physically exhausting as having a tonic-clonic seizure. Absence seizures are much easier to recover from though. The rest and recovery time that comes with epilepsy is something people can struggle to wrap their heads around.
No more comparison
Social media has made us experts at comparing ourselves to others, so it can be tough seeing people my age achieving goals that I haven’t. When I feel this way, I remind myself that I’ve been through a lot and I’ll get there in my own time.
Source: cosmopolitan.com, Jade Biggs