Receiving a diagnosis was tough and a part of my life changed from then on in.
Diagnosis
Despite having petit mal (absences) seizures as a child, I was first diagnosed with epilepsy in my late teens after having a severe tonic clonic seizure on a beach in Australia. I remember telling my dad I didn’t feel well and started walking back towards our apartment, fortunately he was there to catch me as I fell into having a tonic clonic seizure. As I came round in hospital, it was difficult trying to piece what had happened back together and despite doctors being able to answer basic questions, they only told me ‘’it was most likely to be an epileptic seizure, but I would have to wait for a full diagnosis from my own GP’’. I was started on my first anti-epileptic drug, sodium valproate for the remainder of the trip and was asked to see my GP for further advice once I’d returned to the UK.
Challenging times
Receiving a diagnosis was tough and a part of my life changed from then on in. I struggled on so many levels, simple everyday tasks were exhausting and medication side effects felt like they were crippling my body in so many ways. Overall I never really thought much about the initial diagnosis, just that the impact of taking medications was changing who I was and I found it hard to comprehend. I often reached a mental phase of hitting rock bottom and feeling like I couldn’t carry on anymore. Overtime, I felt incredibly withdrawn and isolated, it just became easier letting my parents control the majority of my life rather than make my own decisions. During that time my diagnosis was rarely spoken about, it just seemed like nothing really never needed to be said.
Despite facing some incredibly tough and challenging times, I’ve felt supported by seeing the same GP for 15 years and during my first medication change, had weekly meetings for over 18 months. The whole experience of having had seizures has often left me feeling very lonely. I’ve never known anyone else diagnosed with epilepsy personally and never wanted to feel like a burden with talking too much about the way I felt. People would often give me sympathy, but all I really longed for at this time was wanting to know that people understood how I felt without having to go into ‘heavy and uncomfortable conversations’. I never really found anyone through my younger years of having epilepsy who understood how I felt, and this impacted me negatively. I became very withdrawn and depended on feeling satisfied by relying on my own company. I just didn’t need anyone.
Feeling anxious
Over the years, I’ve noticed that one of the biggest changes was how epilepsy came with extreme anxiety/mental health struggles and experiencing public discrimination surrounding the condition didn’t help. Being anonymous through online forums helped me to offload my emotions but the most consistent support I felt during this time came from being able to confide in my GP. I now have ongoing therapy to keep my anxiety at bay.
Employment struggles
Through some of my education years, I studied at college and wanted to pursue a career in childcare. But having epilepsy made elements of the placement criteria hard to complete and in return it was challenging feeling motivated with continuing my studies and thinking about the future. My college tutor offered to refer me to see the college counsellor to try and figure out a plan because I was also struggling a lot with my mental health during this time. Once I’d qualified, I spent time working in a variety of temporary childcare placements before accepting a contract in Greece to be a hotel nanny. This was a huge opportunity at the time and after discussing with my GP, I decided to embrace the opportunity of potentially spending some time abroad. I attended interviews in London and filled out documents along with my medical evidence to later find out I got accepted for the job. My parents took me to the airport whilst I was in a nervous but excited state of mind.
That job wasn’t all that I had hoped it would be. The hours were long and there was also an expectation to complete overtime as well. Having done all this meant that I tended to have around 7-8 hours of time each day when I wasn’t working, usually less. Due to hot climates and lack of sleep, I was exhausted. I got to the point of feeling so lonely and unhappy. I just felt so insanely desperate to escape that I attempted to overdose on my medication. I never felt that I wanted to die, I just couldn’t cope anymore, I’d had enough, I needed to go and knew it was the end. I just felt like at that time there was no escape. I was just on my own. I ended up in a Greek hospital with night nurses at my bedside because I’d put myself in a coma and needed my stomach pumped. In the end my dad had to bring me home, that was definitely one of the most vulnerable points of my life.
Referral to the Epilepsy Centre
It was at this point that I was referred to the Epilepsy Society's Chalfont Centre under the care of one of their consultants. My consultant was intrigued by my experience and he asked me to become a case study for other professors to understand more about the impact of my epilepsy. I have now been seeing my consultant for 11 years. He has been phenomenal and helped support me in finding a better quality of life and encouraged me to accept the negative thoughts that came when an epilepsy diagnosis was put in place. My consultant has never judged me for a difference in choices but continued to be supportive throughout all my medical care.
I'm now helping to support others with epilepsy through raising awareness and becoming one of the community ambassadors for Epilepsy Society to represent the charity around the country through my instagram page @capturing.epilepsy
