By: Mpho Shelile
Unfortunately, the stigma of living with seizures is felt by members of the epilepsy community on a regular basis in many different aspects of life. Stigma can be the biggest struggle of a person’s epilepsy journey. People with epilepsy and their caregivers often bear the negative attitudes surrounding this condition. Historically, epilepsy has been a misunderstood and stigmatized disorder. Mostly because of the myths and misconceptions that surround it.
A person with epilepsy may experience stigma in subtle or overt ways. For example, a person may be discriminated against at work by not being offered a promotion because of their epilepsy or a student may be bullied at school because of their seizures. This can lead to feelings of shame, fear, rejection, and not wanting to seek treatment. It can also negatively impact a person’s quality of life.
But what if there was a way to change this narrative? To address the gap in public awareness, this is where Mrs. Nthabeleng Hlalele, the director of Epilepsy Lesotho, an organization established in 2017 to create awareness, encourage education, change the conversation, overcome stigma, enhance and improve the quality of life for people with and affected by epilepsy. Improving understanding, promoting social inclusion, and fostering empowerment related to epilepsy is what epilepsy Lesotho does.
Mrs. Hlalele said that their organization seeks to ensure every patient with epilepsy lives a normal life, however one of the major challenge they face as an organization is lack of funding, so they cannot carry out their activities which include reaching remote areas in Lesotho, this in turn causes them to not participate fully in the organization as they are confined in their full time jobs. She added that at times they fund activities from their own pockets. However last year there was light at the end of the tunnel when they managed to score a six months fully funded program from the International Bureau for Epilepsy (IBE) which made their job easier.
“Help dispel the myths and misconceptions by sharing facts about epilepsy and encouraging people to learn more about seizure first aid. Misunderstanding, misinformation, and misperceptions about epilepsy and seizures, passed down through centuries which have resulted in stigma, negative attitudes and beliefs related to those living with the disorder, social-distancing behavior, social exclusion, and discrimination, nobody deserves to live like that. This kind of treatment is observed in the workplace, in schools, and in the community because of the public’s inexperience with appropriate seizure response, persistent myths about epilepsy, and their lack of understanding about the abilities of people with epilepsy,” said Mrs Hlalele.
She further stated that people with epilepsy and their caregivers often bear the negative attitudes and beliefs surrounding this condition, and they often do not talk about it as a result. Because no one is talking about epilepsy, the stigma remains. “Let us get everyone to start talking about epilepsy and seizures, let us change our Epilepsy Story,” Mrs. Hlalele pleaded.
She stressed that by supporting and mobilizing the epilepsy community through educational activities, direct services, advocacy, as well as research to accelerate therapies to stop seizures, find cures, and save lives. The Foundation also seeks to educate the general public to better understand epilepsy and seizure disorders, including knowing proper seizure first aid.
“Epilepsy awareness initiative empowers individuals living with the condition by providing them with resources, support networks, and a sense of community. And by fostering a positive and understanding environment, organizations like ours contribute to the emotional well-being of those affected, enabling them to navigate life with epilepsy more confidently. Which is why I believe that our organized efforts aim to bridge this knowledge gap and promote an environment where people with epilepsy are accepted without judgment is for a good cause,” she said.
Affirming that it is essential to foster a more compassionate, informed, and inclusive society that supports the well-being of individuals living with this neurological condition. Adding that their organization also seeks to educate the general public to better understand epilepsy and seizure disorders, including knowing proper seizure first aid.
Mrs. Hlalele expressed that by challenging stigma, organizations empower individuals with epilepsy to take control of their lives, pursue their goals, and contribute to society without fear of judgment or discrimination because stigma can have a profound impact on the emotional well-being of individuals with epilepsy and their families. Raising awareness helps create a supportive environment where individuals feel comfortable seeking help and sharing their experiences.
Many people lack accurate information about epilepsy, leading to misconceptions and fear. “Collectively, we want to change our epilepsy story to shift the conversation from silence to one of education, safety, and the pursuit of new treatments and one day, a cure. So the only question I want to pose to Basotho is; how are they going to change their epilepsy story?” she concluded.