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. People don’t know that epilepsy is a neurological condition and that seizures are a symptom of epilepsy. While stigma is linked to higher frequency of seizures (Epilepsia 2022), anyone with epilepsy can experience stigma, even if seizures are well controlled.
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 them to feel shame, fear, rejection, and not wanting to seek treatment. It can also negatively impact a person’s quality of life (Epilepsy & Behavior 2021). And because no one is talking about epilepsy, the stigma remains. People hide their condition, and the cycle continues.
But what if there was a way to change this narrative?
Below are a few things you can do to shift the conversation and help address the stigma for you, or a loved one who has been impacted by epilepsy.
Educate Those Around You
Help dispel the myths and misconceptions by sharing facts about epilepsy and encouraging people to learn more about seizure first aid.
Find Resources in Your Community
The Epilepsy Foundation has offices and partners throughout the country that offer local assistance and support groups.
Seek Self-Management Resources
A person with epilepsy doesn’t have to do this alone. There are self-management programs that can help address the psychological effects that stigma can cause to improve a person’s self-esteem and help them strive for better seizure control.
Share Your Story
Share your epilepsy journey and triumphs over stigma. By sharing your story, you can empower others to seek better outcomes and help build a broader understanding of epilepsy and seizures so that we can confront the stigma head-on.
Join Us to End Stigma
The Epilepsy Foundation, in collaboration with the Centers for Disease Control & Prevention, launched “Change Our Epilepsy Story,” a public health campaign to reduce the stigma associated with epilepsy.
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. How will you Change Your Story?