What I Wish People Knew about Epilepsy
Usually I never stop to think about my epilepsy, it hangs out at the back of my mind. I find acceptance of the affliction, the best medication and then get on with life. Being asked to write an article about epilepsy to tie in with Epilepsy Awareness Day, however, has made me stop to make sense of the pros and cons of my disability, so here come the tears to blur my vision. Please forgive any overtones of anger, they are not intended.
I am inspired by some of the mighty greats (quoted below) who also lived with this condition so I push myself a little further than I might otherwise.
“All that is really worth the doing is what we do for others” Lewis Carroll
I experience the kindness of strangers. Usually I don’t have the opportunity to thank them so: A Big Thank You to all who have helped me along the way.
Adversity can bring with it a new challenge helping us explore new perspectives and opportunities. Epilepsy helped me forge a new career in counselling and a new interest in life when I had to give up the adventures of climbing and driving (which is what bee-keeping involved).
“I am not an adventurer by choice but by faith” Vincent Van Gogh
There is a big difference between the perceived difficulties for a person with epilepsy, and the actual difficulties. The perception is that a person with epilepsy could easily injure themselves by hitting their head, walk under a car, cause injury to others, bite their tongue, die, go insane…and more. But the actual difficulty is the narrowness of others’ perceptions and discrimination. Before my epilepsy kicked in I worked in schools and nurseries (I’m a qualified teacher) however, equal opportunity laws didn’t protect me once my epileptic condition was brought to the heads attention.
“5%, of a randomly selected group is likely to have an episode of clinical depression. If you take 100 patients from a general practitioner’s office, roughly 10% will have had an episode of clinical depression. If you consider 100 patients with epilepsy, 33% have, or will have, an episode of clinical depression”. - George Tesar, US psychiatrist
Socialising can be challenging, especially when others are concerned with their public image. I have a strong memory of being at a party and a neighbour telling my son to “take your mum home” (epileptics have no feelings of course) when I had an ‘absence’. Read between the lines: epileptics are an embarrassment, and not much fun to have around.
“Despite everything, no one can dictate who you are to other people” Prince
I have been shocked by the lack of empathy by some in the medical profession. I once overheard my pediatrician tell a nurse angrily “why is she having a baby, she’s epileptic!” I was chastised by my GP for daring to complain that my prescription wasn’t ready and a chemist once reprimand me for forgetting to renew my prescription, something I’d done only one time in 20 years. My own GP told me I’m lucky; if I’d been born a few years earlier, I’d be in an institution.
What would I like the general public to understand about epilepsy? That living with epilepsy is by nature living dangerously only as the risk (of another seizure) cannot always be fully managed by medication. Apart from this risk people with epilepsy live a ‘normal’ life. People with epilepsy work, think and even have sex. We want to fully live our life.
I liken epilepsy to diabetes which also has a risk of seizures. Diabetes somehow seems a more respectable illness to live with, having diabetes is not seen as a ‘mental’ condition despite it also causing seizures and I would like to be awarded the same kudos. Epilepsy is a neurological, not an intellectual condition.
People with epilepsy are mostly open to talk about it (unless they are hiding it from their employer). I consider myself fortunate as I work among considerate people who don’t judge me; they are all counsellors like myself. The big paradox is, in a centre for talking therapy nobody ever talks about it .