Stigma and Epilepsy

ד``ר תמרה אליזוב פישל
| 14/11/2019 |
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‘‘ The history of epilepsy can be summarised as 4000 years of
ignorance,superstition and stigma, followed by 100 years of
knowledge,superstition and stigma’’.

Rajendra Kale, India
(Bringing Epilepsy Out of the Shadows –
BMJ 1997;315:2–3)

Have you ever felt that your Epilepsy was ….
Something to be embarrassed or ashamed of?
Or Something you should hide?

If you answered yes, then you are not alone.
If you answered yes then you, like up to 50 % of people with epilepsy ,feel stigmatized as a result of having epilepsy.

So what is Stigma?

Originating from the word stigmata meaning brand or tattoo, stigma - broadly defined – refers to the shame and negative feelings attributed to something that is regarded as socially unacceptable . Stigma can either be perceived, which occurs when individuals internalize and accept society’s negative attitudes towards them Or Enacted which refers to the prejudice and discrimination that a person suffers as a consequence.

Both forms of stigma are the outcome of over 4000 years of ignorance and myth. The history of epilepsy reflects the often dark history of the medical misunderstanding of illness. Over the centuries epilepsy has been thought to be conjured up by the moon or spirits,be both sacred and demonic, contagious and at times violent, hysterical or a sign of weakness, a mental illness or a physical and intellectual disability.

Irrespective of the theory of the time, the person with epilepsy was often feared and rejected - isolated and discriminated against .Until 100 years ago people were often incarcerated, forced to live in colonies, hospitalized against their will ,not allowed to vote, marry or have children .
Thankfully, ever since seizures have been understood as an electrical event in the brain, major strides have been made in terms of our scientific understanding of epilepsy. As a result, there has been an exponential growth in treatment options – both medical and surgical – and an overall improvement in seizure control.
This, in turn has redefined epilepsy as a chronic illness that can be - in 70% of cases - well controlled.

And yet, despite these dramatic steps forward, most studies still illustrate that over half of the people with epilepsy still feel isolated, embarrassed or ashamed of their condition.


Because - Society often takes a long time to catch up and the remnants of myth and misunderstanding still linger on.
Because - Stigma is the byproduct of both fear and ignorance.
Fear of the unknown &
Fear of others who are different.

During the course of history many diseases have been stigmatized, however epilepsy perhaps more than most. This is often attributable to the nature of seizures, which are often unpredictable, appear dramatic and once the seizure subsides there are no outward identifying signs which only evokes more confusion and misunderstanding.

So Epilepsy is often, despite being manageable in the majority of cases, a hidden disease.

The WHO has recognized the profound impact of epilepsy related stigma on both PWE and their families which inspired their global campaign “bringing epilepsy out of the shadows “.

Needless to say, you have the right to choose whether or not you share your diagnosis, however if your silence is motivated by shame and fear than you are amongst the many who are affected by stigma.
In numerous studies, perceived stigma was associated with lower self esteem and reduced perceived self efficacy, poorer compliance to treatment, poorer seizure control, more symptoms of anxiety and depression and an overall poorer quality of life.
This may be surprising to some of you. It may be surprising that your seizures are NOT the main predictor of your wellbeing especially considering that that's usually what everyone focuses on. In fact, numerous studies have agreed that your quality of life is as much ( if not more) a result of how you cope with your epilepsy and how you feel emotionally ,as it is about how many seizures you have.

Understanding this, and how stigma affects your life is the first step to mitigating its effect on your life. Once you acknowledge that you have been carrying around the burden of centuries' old fears and myths about epilepsy - that were not of your making – you are one step closer to being freed of them.
Freed of the shame, the embarrassment, the fear of disclosure and the overwhelming sense of isolation.
So what can you do?
Well, the first step is to learn more about your illness – knowledge and understanding are the best antidotes to accepting society’s myths and misperceptions about your epilepsy. Knowledge is empowering and helps you deal with the often unpredictable and uncertain nature of epilepsy.
The next step - if and when you are ready – is to share that knowledge with your family and friends. Myth and misunderstanding about epilepsy still linger amongst the general public, teachers, sport coaches , spiritual guides, employers, health professionals, health policy makers and legislators.
Educating the public – at whatever level you decide – is the next step to dispelling the myths and improving not just your life but the lives of the community of people with epilepsy.

But before you change other people’s perceptions of what it means to have epilepsy, you have to first and foremost change the way you view your epilepsy. For many , talking openly about the impact epilepsy has had on your life can help you improve your quality of life.
So whether it be with a friend, family, forum chat, a selfhelp group or a therapist –
The most important step is to first step out of the shadows.

- tamara elizov fischl-Psychiatrist with extensive experience in treating people with neurological disorders

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