Health Opinion

Even today, epilepsy is still misunderstood

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About 250,000 Australians are currently living with epilepsy (Image via Pixabay)

EPILEPSY, PAST and present, has been stigmatised due to varying beliefs, magnitudes and discrimination.

Hammurabi's code, as proclaimed by Babylonian king Hammurabi – who reigned from 1792 to 1750 B.C. – proscribed that a person with epilepsy could not marry, nor could they testify in court. When the fight against the supernatural and the occult started in the 17th-century, epilepsy was seen as a demoniac influence.

In the 18th century, epilepsy was seen as contagious and people were not to associate with people with the condition. By the early 19th century, people with epilepsy were labelled as insane and locked in asylums. 

Fast forward to the present. In 2011, a study from North America investigated epilepsy stigmatisation as it occurred on social media. Unbelievably, the study found that out of almost 11,000 tweets, 41 per cent were derogatory. Although this study is nearly ten years old, epilepsy is still widely misunderstood and stigmatised, even in 2020.

Both globally and nationally, there are a significant number of people living with epilepsy. Worldwide, it is estimated to be the upper end of 65 million people. Meanwhile, nationally, approximately 250,000 Australians are currently diagnosed with epilepsy. This figure makes epilepsy more common than Parkinson's disease, cerebral palsy and muscular dystrophy combined. Yet, despite this high proportion, epilepsy is viewed by some as an intellectual disability.

I am one of around 250,000 Australians living with epilepsy. I also sit within the 30 per cent bracket of people who cannot control their seizures with anti-epileptic medication. The seizures I suffer from are tonic-clonic, tending to be the most universally recognised seizures.

The body becomes quite stiff (tonic) shortly followed by jerking of the muscles (clonic). It generally lasts no longer than two minutes. Typically, the seizure is followed by a period of confusion, with headaches and soreness common afterwards, lasting up to two weeks. As there are no warnings and no predictability associated with the seizures, I can't drive — and I can't get myself to a safe place before the onset of a seizure occurs.

Occasionally, when people discover I have epilepsy, they tend to see me as less equal to them. Yet, epilepsy is certainly no barrier to achievement. Leo Tolstoy, Charles Dickens and Tchaikovsky are all thought to have had epilepsy. Admittedly, some life changes are necessary, but many people with epilepsy are able to lead full and productive lives.

In my view, my epilepsy doesn't define me, but my personality certainly is primed from the experiences associated with hardship from the seizures.

The majority of the time, however, my seizures do not comprise my personal attributes. For every day of seizure freedom, I feel grateful (in comparison to people who moan about having their three week Mediterranean holiday cancelled due to the current pandemic). Although I can't control my seizures, I can control my attitude and be grateful my epilepsy has shown me how ignorant people can be, as it shows me exactly how not to behave.

It is generally well known that stigma and exclusion are common feelings associated with epilepsy and are major contributors to the burden associated with the condition. At times, surrounding my seizures, I do feel the insensitivity and ignorance from co-workers and even friends. Certainly, in my workplace, it has been awkward and isolating.

One of the things I have found most offensive is when my healthy co-workers interject my epilepsy with humour — which is likely due to lack of awareness surrounding my struggles with epilepsy and not malicious intent mocking my condition.

My first round of neurosurgery in 2019 involved having probes implanted into my brain with a surgical drill. "Could've used the Makita for that," one co-worker joked. "How was your brain transplant," was one comment delivered after my return to work, following the second round of neurosurgery (which consisted of having a sizable portion of my left frontal-lobe removed). If only they'd suffered what I had, there would be nothing to quip at.

Another time, when discussing heavy metals exposure and the correlation with Alzheimer's disease, a co-worker quipped, "well you can always have another section of your brain removed". Consider if you had your left breast removed due to cancer. No-one would joke about having the other breast removed. Which brings another question: If, in 2020, epilepsy is classified as a serious medical condition, why do some people think it is something to find humorous?

 Nothing to laugh at — post neurosurgery (photo supplied)

Eventually, my co-workers realised – through my educating and creating awareness about epilepsy – that although seizures are a part of me, they do not define me. This realisation took months and was as equally about my being embarrassed by my seizures as it was about my co-workers accepting them.

Occasionally, I need time off for an appointment with my neurologist, but no more than a working Mum who needs to go to a school assembly.

Society is finally at a place where we no longer believe that epilepsy was challenged as part of the fight against the supernatural — as we did in the 17th century. In the 21st century, we know epilepsy is caused by genetic influences, head trauma and brain conditions, like tumours or strokes. Instead of treating epilepsy with magic, we treat it with diet and drugs. Yet, with the way some view and perceive epilepsy, there is still so much further we need to come. 

Reducing the stigma of epilepsy is key to improving individuals' life opportunities and quality of life. In my experience, by working towards educating my co-workers about epilepsy, certain stigmas and preconceived notions surrounding it were lifted and epilepsy stereotypes debunked.

So, if you think epilepsy is a disability that defines someone or is something to jibe at — it isn't. A point worth considering, the next time you interact with someone with epilepsy.


To learn more about epilepsy and about research and funding for the treatment of epilepsy, you can visit Australian Epilepsy Project.

Alyce Sala Tenna lives in Perth, Western Australia. Outside of managing her epilepsy, Alyce works at a consultancy as an environmental scientist.

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