Epilepsy continues to be a highly-stigmatized disease worldwide, despite recent scientific developments. Many people still believe old myths, like that epilepsy is a result of demonic possession or that it’s a contagious disease. Epilepsy patients in developing countries are most at risk of discrimination, but it happens all over the world. From strangers laughing and staring during a seizure to family problems, epilepsy patients encounter all sorts of difficulties that make a challenging condition even worse.
This International Epilepsy Day is all about raising awareness and reducing the stigma surrounding this disease. One of the main reasons epilepsy is so stigmatized is that many still don’t know much about it. Just by spreading the word and talking about epilepsy openly you can already help reduce the stigma, even by a little bit.
We decided to break down the stigma and myths surrounding epilepsy and find out what discrimination patients may face.
What Is Epilepsy?
Epilepsy is a chronic noncommunicable (non-contagious) neurological disease characterized by frequent seizures. There are multiple types of epilepsy, each with different symptoms resulting from the parts of the brain where the seizures start. Younger children and older adults are most likely to develop epilepsy, although anyone can be affected.
Epileptic seizures are caused by an unexpected and unusual surge of electrical activity in your brain. Although there are many different types of seizures, the most common ones are generalized seizures and focal seizures. The difference between the two is that generalized seizures affect the entire brain while focal seizures only affect one area.
Epilepsy seizures can range in severity, with some only lasting a couple of seconds and being barely noticeable while others can last a couple of minutes and the patient may even lose consciousness. Symptoms of seizures include dizziness, muscle spasms, and twitching. Focal unaware seizures may lead to unresponsiveness and repetitive movements.
Although seizures seemingly seem to come from nowhere, there are some known triggers. The triggers are different from patient to patient but some include bright and flashing lights, fatigue, stress, illness, low blood sugar, and a head injury.
Epilepsy also comes with a range of other health complications you might face like a learning disability and depression.
What Stigma Do Epilepsy Patients Face?
If you don’t live with epilepsy, you may have never known the stigma that people with epilepsy face every day. Although the world is slowly starting to get more accepting of people with epilepsy, in part because of scientific discoveries, it still remains very stigmatized.
Stigma refers to a negative and shameful attitude towards people with unique characteristics. According to this definition, epilepsy patients certainly face their fair share of discrimination, misunderstanding, and unhelpful attitudes. Multiple studies interviewing people found that many had negative attitudes towards people with epilepsy. Some described epilepsy patients as “weak, aggressive, violent, antisocial, and retarded.” Another study found that epilepsy is much more stigmatized compared to mental illness and cerebral palsy.
People with epilepsy often find themselves being laughed at and shunned. Some describe situations where they’re having a seizure only to find strangers pointing and laughing, instead of helping out. Epileptics are also less likely to get hired in many jobs because of their seizures, leading to many not disclosing their diagnosis.
People living in developing countries are most likely to be socially shunned because of epilepsy. Examples of regions where epileptics face special stigma include Zambia and Uganda, whose cultures still heavily believe that epilepsy is some kind of demonic possession, a curse on the family, or a contagious disease. Nina Mago, an epilepsy advocate in Uganda, describes that she was bullied in school and that her teachers were afraid of her. She recalled waking up wounded on the dirty floor while other kids would make fun of her.
Not only do patients with epilepsy face discrimination and bullying, but they’re also not likely to get the medical care they desperately need. According to the World Health Organization, more than half of epilepsy patients would be able to have a life without seizures if only they got a diagnosis and proper treatment.
It’s clear that being excluded from society and discriminated against will have a bad impact on your life. Epileptics often don’t talk about their epilepsy and hide themselves away because they’re scared of discrimination. People with epilepsy are also much more likely to develop mental health problems like anxiety and depression because of this stigma.
Is there anything we can do to help reduce the stigma and discrimination epileptics face?
Sadly, there’s not much that you alone can do, but you can make a small difference. People fear what they don’t know and are quick to exclude those different from them. If only more people knew about epilepsy and the terrible things those with it face.
Talking about epilepsy or sharing powerful online resources is a great way to make a small difference. If you know anyone that has epilepsy make sure to treat them with kindness and not disrespect. You can share your story online if you have epilepsy, so that more can find out about it. One person at a time, we can make a difference.
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