Emma Griffith explains how being supported by the Epilepsy Society's Chalfont Centre for a decade has helped her to turn her life around and encouraged her to share her story.
Emma, 30, was first diagnosed with epilepsy in her late teens after having a severe tonic clonic seizure on a beach in Australia.
Emma says ‘’I still don’t remember the whole thing, but doctors gave me basic understanding on what had happened. They 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’’.
Emma was started on her first anti-epileptic drug, sodium valproate for the remainder of the trip and was asked to see her GP for further advice once she returned to the UK.
Emma felt her life changed after getting a diagnosis. ‘’It felt pretty impossible to see anything positive at the time,” she says. She found it tough coping on a day to day basis and feeling the impact of medication side effects was exhausting on every level for her.
‘’I never really thought much about the diagnosis, just that taking medications was turning me into someone else and I often reached a mental phase of hitting rock bottom and feeling like I couldn’t carry on anymore” she continues. As she felt incredibly negative about everything, she let her parents take the lead in making decisions and her diagnosis was rarely spoken about.
Despite facing some incredibly tough and challenging times, Emma felt supported by seeing the same GP for 14 years and during her first medication change, had weekly meetings for 18 months. The whole experience of having had seizures has often left Emma feeling very alone. People would often give her sympathy, but all Emma really longed for at this time was wanting to know that people understood how she felt.
“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 I became very withdrawn and depended on feeling satisfied by relying on my own company.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’’ she says.
Emma noticed that one of the biggest changes was how epilepsy came with extreme anxiety and experiencing public discrimination surrounding the condition didn’t help.
Emma felt insecure and emotional but knew she could trust and confide in her GP. She felt incredibly isolated and turned to using the epilepsy forum frequently for another source of support. She struggled to grasp where she stood with having a medical condition, as she didn’t know anyone else that had been diagnosed with epilepsy. She felt like no one could answer questions she had simply because the testing and investigations frequently came back as inconclusive.
During this time, Emma was studying 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 she felt lost without being able to identify where her future lay. Her college tutor offered to refer her to see the college counsellor to try and figure out a plan.
Emma spent time working in a variety of temporary childcare placements before accepting a contract in Greece to be a hotel nanny. Emma knew how big this opportunity was and had her GP on board. After being invited for an interview in London, Emma attended with her medical documentation in tow. Once she had been offered the job, Emma travelled to the airport with her parents in a nervous but excited state of mind.
That job wasn’t all that Emma 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 she 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, Emma often felt insecure, and knew it was because she was exhausted.
"I got to the point of feeling so unhappy and so desperate to escape that I attempted to overdose on my medication. I didn’t feel that I wanted to die, I just couldn’t cope anymore, and it felt like there was no end to how I was feeling or no one to confide in. As I was taken into hospital, my dad flew out to bring me home and it was an incredibly rough time’’ she said.
Referral to our Chalfont Centre
It was at this point that Emma was referred to the Epilepsy Society's Chalfont Centre under the care of one of their consultants. Her consultant was intrigued by Emma’s experience and he asked her to become a case study for other professors to understand more about the impact of her epilepsy. Emma has now been seeing her consultant for 11 years. Emma says: “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.” She says her consultant has never judged her for a difference in choices but continued to be supportive throughout all her medical care.