Nervous System Mysteries: The Social Stigma Surrounding Epilepsy

Epilepsy, a chronic neurological disorder characterized by sudden seizures, has mystified both patients and researchers alike for years with its baffling neuronal mechanisms and unpredictable nature.

Each year, about 200,000 new cases of epilepsy are diagnosed—just as many as breast cancer.

Of these 200,000 cases, 70% have no apparent cause [1].

Looking at these statistics, it is not surprising that the phenomenon of epilepsy and the treatment of its patients demand such attention in the scientific community. However, the issue is still overlooked, and research remains largely underfunded at about $35 a patient compared to other neurological disorders, such as the $280 amount for multiple sclerosis [2]. Although studies have been conducted to unveil the true nature of this impulsive disorder, specialists are still very much in the dark when it comes to clearly elucidating why epileptic patients face the alarming syndromes they do.

And along with the slow rate of development of epileptic research, victims of this ailment remain as ostracized from society as they did ten, twenty, even thirty years ago.

Commonly referred to as a “storm in the brain,” epilepsy is so frightening because of its unpredictable nature and the patient’s complete loss of self-control [2]. The repeated seizures that burden the lives of epileptic patients are episodes of abnormal neuronal activity, caused primarily by excessive electrochemical signals in the brain.

When these unprovoked electrical impulses take place, patients lose complete control of their mental and physical functions.  This sudden response can be characterized by a wide range of symptoms, from blank stares and small jerking movements to uncontrollable convulsions and loss of consciousness.

Imagine your average child: innocent, naïve, sitting at a desk in a second-grade classroom. All of a sudden, he is on the ground, his body writhing wildly on the floor, froth bubbling at the corners of his mouth. The frustration that neurologists face in battling epilepsy is truly insignificant in comparison to the immense toll that this ailment takes on its victims and their families.

Epilepsy presents its patients with psychological and social challenges, and the stigma that is automatically attributed to them because of this disorder is in no way easy to deal with.

An Identity Crisis

Because the brain is such a vital part of the human body, one major challenge for epileptic patients is definitely coming to terms with the fact that their brains work differently. Patients have a deeply altered perception of themselves and struggle with accepting their condition, especially in relation to everyone else around them [3]. As Michael D. Hills from the Department of Psychology at the University of Waikato puts it, epileptic individuals face a sort of identity crisis — the traumatic question of “Who am I?”

In addition, epilepsy is often known as an “invisible” disease, because the seizures are so sudden and have no apparent cause. As a result, a fear of the unknown develops in the epileptic individual, as they never know when a seizure will strike [3]. Apprehension, anxiety, and constant depression are unavoidable as they struggle with the sudden nature of the disease and consequently often deny that they have such an illness. Hills states that this denial leads to “concealment” and patients’ refusal for both treatment and support.

Ultimately, epileptic patients feel that they are already so alienated from others because their brains function differently, and the sudden nature of this disease only leads them to isolate themselves even more. Victims plunge themselves into a world of loneliness as they struggle to come to terms with a disease that attacks without warning and accept themselves as different [3].

Social Discrimination

Humans have an inherent habit of distinguishing and labeling differences amongst themselves, and this automatic categorization alienates epileptic patients to the point where they face extreme discrimination. In a society so heavily plagued by predetermined views and quick judgment, epileptic patients are often singled out to be “abnormal” and are not guaranteed various fundamental rights [4].

For instance, laws in the United States and Great Britain that prohibited epileptic patients to marry were repealed only in the late 1980s and early 1990s. Until the late 1970s, legislations in the United States also prevented epileptic patients from entering public buildings such as restaurants, shopping centers, and theaters [US Department of Health]. Although these laws are no longer in effect, the underlying social divisions that they have created in the past thirty years are still present today.

And the statistics show.

A few years back, a survey in China showed that 31% of the participants believed that epileptic patients should remain unemployed [US Department of Health]. And in developed countries such as Great Britain, about 50% of epileptic victims remain unemployed while the numbers climb to 100% in many developing countries. Prejudice is still very much present in today’s society, and this discrimination only further contributes to the already difficult internal struggle that epileptic patients go through to accept themselves.

 

 

 

 

 

The Solution

The fundamental problem is that even though epilepsy has been around for decades, the level of awareness of the disorder is astonishingly low. And this is ultimately the root cause for the detrimental social effects that epileptic patients face.

Epilepsy is a relatively new disorder, and because it does not receive much attention or funding, a large fraction of modern day societies are not even aware that such an ailment exists due to specific scientific reasons. Because communities have not been educated about the causes and effects of epilepsy, let alone the presence of such a disorder, individuals who suffer from periodic seizures are designated to be abnormal.

The good part is, there is an easy fix for this: raise awareness.

Epilepsy should be just as well known as breast cancer, AIDS, multiple sclerosis, and any major disease, because epileptic patients go through just as much as those of any other illness. Victims of epilepsy cannot be neglected simply due to the fact that they have, by chance, been born with a disorder that is relatively new. Awareness needs to be raised, and communities need to be educated. This requires more support groups, more fundraising, better treatment programs, and funding for epileptic research. Action needs to be taken urgently. Only then will justice be served to the courageous patients who live with this disease.

A Perpetual but Quiet Danger

The alarming nature of epilepsy and its symptoms urgently calls for attention. As Pulitzer prize-winning author Jon Meacham states, “Most people with epilepsy are not in a constant state of seizure – they are, rather, in perpetual but quiet danger.”

The battle will truly be won not only when societies all over the world acknowledge and understand the challenges posed by epilepsy, but when epileptic patients no longer need to bear the social stigma of their disability. Epilepsy needs to be widely acknowledged and epileptic research needs to be funded, for this disease is too dangerous and too widespread to be ignored any longer. Epileptic patients need to be supported and understood, just as much as patients of any other neurological disorder.

For in the end, we are all human.

References:

1 Epilepsy Foundation of America [Internet]. [Place unknown] Epilepsy and Seizure Statistics [cited 2010 November 14]. Available from http://www.epilepsyfoundation.org/‌about/‌statistics.cfm.

2 Meacham, J., The Mystery of Epilepsy. Newsweek, 38-41, 2009 April 20 [cited 2010 November 14]

3 Hills MD., The Psychological and Social Impact of Epilepsy, Department of Psychology, University of Waikato, Hamilton, New Zealand, 2007 [cited 2010 November 14].

4 Leppik, I., Kelly, K., DeLorenzo, R., Mathern, G., White, H., Patrylo, P., & DeToledo-Morrell, L. Basic Research in Epilepsy and Aging. Epilepsy Research, S21-S372005 December 27 [cited 2010 November 14] Available from http://www.sciencedirect.com/‌science?_ob=ArticleURL&_udi=B6T34-4HWXP261&_user=5215657&_coverDate=01%2F31%2F2006&_alid=1503937194&_rdoc=2&_fmt=high&_orig=search_origin=search&_zone=rslt_list_item&_cdi=4936&_sort=r&_st=13&_docanchor=&view=c&_ct=11991&_acct=C000065845&_version=1&_urlVersion=0&_userid=5215657&md5=396c5f2c2bd818b33a39e5dde188332b&searchtype=a.

Paulomi Bhattacharya is a sophomore at the Harker School in California