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Confronting the Epilepsy Stigma

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Confronting the Epilepsy Stigma

Kristen Batson , is a board certified adult-geriatric nurse practitioner treating patients from the age of 13 through end of life. She graduated in 2011 from the University of Florida with her bachelor’s degree in nursing. She worked for several years as an RN while working on her master’s degree in nursing at the University of Central Florida.

 

 
January 2021

The definition and classification of epilepsy have changed through the history of the disease and has led to great confusion. Several patients suffer from seizures but still don’t like to label themselves as having “epilepsy.” Put simply an epileptic seizure is a transient event of neurological signs/symptoms that occur due to abnormal electrical activity in the brain. Epilepsy is a disease characterized by a predisposition to generate these epileptic seizures. Epilepsy can be diagnosed after having two unprovoked seizures occurring greater than 24 hours apart. Some patients can be diagnosed with epilepsy after having one unprovoked seizure if they have risk factors that place them at a higher likelihood of having more seizures in the future; this can include the presence of a structural brain lesion or abnormalities in electrical activity seen on an EEG. The term “unprovoked” implies that the seizures were not triggered by a reversible medical condition like a very low blood sugar or alcohol withdrawal.

Many patients are reluctant to use the term epilepsy if they were diagnosed later in life or have had only a few seizures. The term “epilepsy” does not imply anything about the cause of the disease or the severity. Epilepsy can be caused by a variety of things including a family tendency, brain injury, or structural abnormality of the brain; it is also not uncommon for the reason to be unknown. Epilepsy can range from very mild seizures that occur rarely and are easy to control to severe disabling seizures that occur daily. Epilepsy is typically diagnosed based on an evaluation of the clinical symptoms that happen during the events, but diagnostic tools such as brain scans and EEGs can be instrumental in confirming and accurately diagnosing the type of epilepsy.

In addition to confusion regarding the definition of epilepsy, there is a longstanding and known stigma regarding the term “epilepsy.” Epilepsy is more common than people think, affecting 1 in 26 people and over 50 million people worldwide. The disease can look different from person to person, and although restrictions may be needed, many people with epilepsy can lead normal lives and do things such as work, sports, and even drive if their seizures become well controlled.

Throughout history, epilepsy has been plagued by stigma and discrimination. Stigma is a negative judgment often rooted in misconception and inaccurate beliefs. In ancient times, epilepsy was thought to be contagious or caused by possession by the devil or other evil spirits. This conception persisted for several centuries, and it is obviously an unfounded and inaccurate assumption.  Even up until the 1960s, several states forbid marriage among people who had epilepsy-another example of how inaccurate and outdated stigmas have persisted in our society. Many people carry the perception that people with seizures are unlikely to be successful at work or school. These stereotypes persist despite the fact that most people with epilepsy are able to have good control of their seizures with medication.  People with epilepsy often harbor some stigma themselves- reporting great embarrassment over their disease and are often reluctant to share with their friends and colleagues.

Increased advocacy and public awareness is one way to help improve the education of the public on the truth about epilepsy, help normalize its existence, and put to rest outdated misconceptions. This can begin with the patient and family themselves who choose to open the conversation and share their stories.  Although epilepsy is a qualified disability under the Americans with Disability Act (ADA), more can still be done to help ensure equality in the workplace. Discuss stigma with your health care provider who may be able to help advocate for your rights in school and work. Consider reaching out to a local chapter of the Epilepsy Association for further education about epilepsy, resources for those facing discrimination, and efforts in legislation to help improve the lives of those with epilepsy.  Through these efforts to address and dismiss stigma, we can help improve the quality of life and care of patients with epilepsy.

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