The Invisible Burden of Epilepsy

Epilepsy is a serious neurological disease that affects millions of people worldwide. Around 5 million people are diagnosed with the condition each year. But the burdens that people with epilepsy face can be hidden. People with epilepsy can face challenges with both managing their symptoms and telling others about their illness.^1,2

Epilepsy is one of many “invisible” or “hidden” illnesses. These illnesses have symptoms that are not obvious to others. People with invisible illnesses can face unique problems with work, travel, and communication because of misunderstanding and stigma. Learning how to navigate conversations about epilepsy may help ease discomfort.³

What is an invisible illness or disability?

Often, people are considered disabled based on something visible. A physically disabled person may use a cane or wheelchair, for example. But many disabilities may not be directly obvious when looking at those who live with them. Epilepsy, chronic pain, dyslexia, and hearing loss are some examples.^3,4

People are often unaware of the challenges of invisible illnesses. So, people with epilepsy may have a hard time talking about their illness. But it may be necessary to tell other people that they are disabled. The choice of when and how to do this can be stressful.^3,4

Living with epilepsy as an invisible illness

Someone with epilepsy may need to figure out how to tell friends or employers about their illness. This can be tricky depending on how much these other people understand about epilepsy. A disability that is not obvious may cause confusion or suspicion about whether the person is disabled “enough” to receive the help the need.^3,4

In many cases, people with epilepsy are questioned about not looking disabled or ill. People living with epilepsy may have anxiety about when and how to tell people about their epilepsy. The fear of having a seizure in public also can be a big source of anxiety for people. Because of this, socializing may be difficult.^1-4

Also, getting accommodations at work can be hard if an employer does not know about epilepsy. People with epilepsy report work-related worries such as:^1-4

• Losing their employment and health insurance
• Missing out on a promotion
• Being treated differently by colleagues

Unfortunately, stigma and ignorance about epilepsy can cause people to avoid seeking a diagnosis or treatment. This stigma is often worse for women and people of color, who face tough questions of how to navigate illness and identity. For people with epilepsy, it can feel like an uphill battle toward acceptance and understanding.^1,2,5,6

Talking to others about your epilepsy

How and when you decide to tell people about your epilepsy can affect how they react. Understanding the following factors can help you make these decisions:^3,4,6

• Whether an environment is accepting of differences
• Whether the people around you are educated about epilepsy
• What accommodations you may need

Education and self-acceptance are also both key for navigating the challenges of living with epilepsy. Helping others understand the burdens and challenges of epilepsy allows them to be more understanding and accommodating. Knowing your own limitations can help you be more direct and firm in asking for what you need. It can also help ease the anxiety that comes with telling people about your diagnosis.^2,3,6

Everyone deserves to decide when and how to talk about their disability. Understanding and accepting the challenges you face with epilepsy can help ease anxiety and discomfort. Similarly, talking about these challenges and your needs can help others to help you in the ways you need.