A new epilepsy diagnosis can be frightening, but many people with seizure disorders can manage their symptoms well. People with chronic epilepsy can and do live fulfilling, authentic lives with proper treatment and planning. 

In this article, we answer questions about planning for life with epilepsy, including: 

• How much does epilepsy treatment cost? 
• Does the Americans with Disabilities Act (ADA) cover epilepsy?
• What medical and financial assistance programs assist people with epilepsy in the United States? 
• How does epilepsy affect children at school?
• How does epilepsy affect adults at work? 
• How does epilepsy affect communication and social life? 
• How does epilepsy impact mental health? 
• How can support groups help people with epilepsy and their families? 
• Where can I get more information about epilepsy? 

How much does epilepsy treatment cost? 

One of the first things people think about when planning for life with epilepsy is how much epilepsy treatment costs. According to a University of Texas study, the average annual cost of epilepsy care—in addition to regular annual healthcare costs—can be between $8,412 and $11,354, although some studies reported up to $19,749 in annual epilepsy care costs.

The reason for this wide range is the variety in epilepsy diagnoses. Each type of epilepsy requires unique care that changes based on someone’s type of seizures, age, and other conditions. Some people, for example, manage their seizures without medication, while others may rely on a mix of medications and pricey procedures like surgery. 

Epilepsy care can be expensive, but there are government and nonprofit programs that can help offset some of the costs. 

Does the Americans with Disabilities Act (ADA) cover epilepsy?

Rather than covering specific conditions, the Americans with Disabilities Act (ADA) offers protections for people who have disabilities. The ADA defines a person with a disability as someone who:

• has a physical or mental impairment that substantially limits one or more "major life activities," 
• has a record of such an impairment, or 
• is regarded as having such an impairment.

If epilepsy has caused debilitating limitations to you or a loved one, you might qualify for accommodations at work or school. Much of managing epilepsy involves making daily tasks easier and limiting dangers during a seizure. 

The Job Accommodations Network (JAN) offers recommendations, resources, and guides for requesting ADA accommodations at school or in the workplace. When in doubt, contact a JAN adviser or employment lawyer to learn more about your anti-discrimination rights.

If you believe you have been discriminated against and would like help, see the Ability Central services database to connect with a nonprofit specializing in chronic conditions like epilepsy. Many community organizations offer connections to legal and financial services surrounding fair treatment in the workplace. 

What medical and financial assistance programs assist people with epilepsy in the United States? 

People with epilepsy in the United States have options beyond private medical insurance. These include government-sponsored options: 

• Medicare covers people with permanent disabilities and those 65 years old or older.
• Medicaid covers people with disabilities who have lower incomes.
• The Affordable Care Act (ACA) may also assist those who qualify.
• The Social Security Administration offers Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) to people who qualify for assistance. Their website provides specific guidance on what someone with ME/CFS needs to submit as part of their application for support.
• Veteran’s Affairs (VA) provides health care benefits for veterans who have actively served in the military.

How does epilepsy affect children at school?

Many children with epilepsy easily control their symptoms with medication, but for others, epilepsy at school can be challenging. 

Some children with epilepsy have difficulties at school, including:

• Difficulty concentrating, paying attention, or following lessons. 
• Medication side effects like drowsiness, nausea, or fatigue. 
• Frequent absences due to doctor’s appointments or seizure recovery time. 
• Difficulty processing information or expressing themselves, often due to medication.
• Mood swings and behavioral challenges. 

Many of these challenges can be managed with an individualized education plan (IEP) or 504 plan. Many parents and children also work with teachers to create a seizure action plan, or what to do if the child has a seizure during school hours. First aid training catered to seizure disorders can be an excellent part of teacher training. A seizure action plan also helps families communicate possible triggers and work out a medication schedule with a child’s teachers and in-school caregivers.

There is also a social stigma attached to epilepsy, especially if other students do not understand the disease. Kids with epilepsy should be monitored at school to ensure they’re making and maintaining friendships, keeping up with their studies, and feeling safe in their environment.

How does epilepsy affect adults at work? 

Like children, adults with epilepsy may struggle with certain things due to their seizures or side effects of certain anti-epileptic medications. Among these, the most common difficulties adults with epilepsy face at work include struggles with:

• Memory and cognition.
• Time and task management.
• Scheduling, either due to epilepsy-related accidents or needing a fixed schedule to avoid epilepsy triggers. 
• Stress management. 
• Balancing or climbing, like climbing ladders in a warehouse environment.
• Fatigue. 
• Photosensitivity. Flashing lights are a common seizure trigger. Light sensitivity due to epilepsy can be exacerbated by things like fluorescent lighting or computer screens. 
• Privacy. Many people with epilepsy need a private space to recover after a seizure at work.

Under the Americans with Disabilities Act, adults with epilepsy have a right to reasonable accommodations in the workplace. This might look like a seizure action plan, a designated person to respond to emergencies, flexible scheduling, and other things that help someone with epilepsy go about their workday.  

Is epilepsy linked to mental health challenges? 

Some anti-epileptic medications can cause concerning side effects related to mental health, including depression and suicidal thoughts or behaviors. 

Additionally, the social and emotional stress of epilepsy can play a role in poor mental health. Many people with epilepsy struggle with self-esteem, a desire for independence, and feeling like they’re missing out on social milestones like driving, going to bars or concerts, or having an uninterrupted education or career. 

How does epilepsy affect communication and social life? 

Epilepsy, particularly types that develop in early childhood, has been linked to delays or difficulties with language. Eventually, this can grow to affect reading and writing, too. 

Some childhood epilepsies like Landau-Kleffner syndrome can also cause aphasia, a condition in which people stop using and understanding language. 

In adults, epilepsy language difficulties often come from other symptoms, like difficulty concentrating or thinking clearly. These symptoms can also be a result of anti-epileptic medications. In general, language issues in adults with epilepsy are not severe enough to qualify for an aphasia diagnosis. 

Aphasia can co-exist with epilepsy when seizures start due to a stroke, brain tumor, or traumatic brain injury, but epilepsy itself does not typically cause aphasia in adults. 

When we consider these language difficulties alongside mental health concerns, epilepsy can take a toll on one’s social life. Some people with epilepsy report difficulties with:

• Paying attention to or carrying on conversations. 
• Memory loss, including names and faces.
• Recognizing other people’s emotions. 
• Making friends and maintaining relationships. 
• Mood swings and other behavioral patterns. 

How can support groups help people with epilepsy and their families? 

Support groups offer people with epilepsy and their loved ones the chance to speak with others who share their life experiences. This can be extremely validating, as well as a way to make social connections with other people experiencing the same social and cognitive symptoms. 

You can find online and in-person epilepsy support groups through: 

• Your family doctor, pediatrician, or neurologist. 
• Community organizations like schools and churches.
• The Epilepsy Foundation, which offers support groups and social events in most US states.
• Epilepsy Alliance America, which offers virtual and in-person groups. 

Where can I get more information about epilepsy?

Use Ability Central’s Service Locator tool to find nonprofit organizations near you devoted to research, funding, and other care for conditions like epilepsy. These organizations can connect you with information, clinical studies, and care options for children and adults with epilepsy. 

To learn more about epilepsy, see:

• What Is a Seizure? Symptoms, Types, and When To Call an Ambulance
• Epilepsy First Steps: What Should I Do if I Have a Seizure?
• Epilepsy: Symptoms, Types, and Stages of Seizure Disorders
• What is Epilepsy? Common Questions, Causes, and Treatments

To learn more about neurological diseases and conditions like epilepsy, see: 

• Attention-deficit/hyperactivity disorder (ADHD)
• Alzheimer's disease
• Amyotrophic lateral sclerosis (ALS)
• Apraxia and dyspraxia
• Autism
• Cerebral palsy
• Multiple sclerosis (MS) 
• Stroke