4 Support Resources for Epilepsy and Mental Health

Epilepsy News From: Wednesday, May 03, 2023

For people living with epilepsy, issues with mental health can be common. In a study of adults 18 years and older, researchers found that adults with epilepsy were twice as likely to report feelings of depression in the previous year compared to adults without epilepsy.

Anxiety and other mood disorders are also frequently reported by people with epilepsy. As a result, it is crucial to educate the community, provide resources, and advocate for better mental health policies and services for people with epilepsy.

Each May, we recognize Mental Health Awareness Month. Since 1949, this awareness month has promoted the importance of mental wellness and supports people who struggle with their mental health. This month is an important reminder to prioritize your wellness and to emphasize that mental health is just as important as physical health when it comes to living with epilepsy.

If you’re unsure about where to begin on your mental health journey or how to ask for help when you aren’t feeling your best, you can start with the resources below. If you are in need of urgent mental health support, or you are thinking about suicide, please call or text the 988 Suicide & Crisis Lifeline.

Support Resources for Epilepsy and Mental Health

1. Wellness and Resource Toolkits

Emotional health involves being aware of your feelings, mood, and behavior. Recognizing and discussing changes in emotional health with family, friends, and healthcare providers is a step toward improving your overall mental wellness.

The Epilepsy Foundation has many different types of toolkits and factsheets to help you manage your epilepsy, talk with your care team, and support your physical wellbeing. All of these are important steps in creating a better emotional foundation for you to rely on when you're not feeling your best. 

Downloadable resources include:

The Epilepsy Foundation's Emotional Health Wellness Factsheet explains a bit about why epilepsy can affect your feelings in such a significant way.

Seizures can result in a loss of predictability. As a result, people living with epilepsy can begin feeling more insecure. When feelings of insecurity are ignored, depression and anxiety can develop.

If you’re newly diagnosed with epilepsy, you may also experience fear, sadness, or shock. Adjusting to new information about your health is always difficult, no matter what the news may bring.

Additionally, some anti-seizure medications can make a person more irritable, down, or depressed. This happens more often in people who have a mood disorder or had problems with their moods in the past. A family history of mood problems may also increase the risk of medication affecting your mood. We recommend speaking with your healthcare team if you are worried about potential mood-related side effects from your anti-seizure medication.

In this factsheet, you will learn more about what to do if you spot changes in your mood during diagnosis and treatment. You will also be provided with tips on how to improve your emotional health throughout your epilepsy journey.

2. Chronic Disease Self-Management Program

Learning how to manage a chronic disease on your own can be difficult. Even if you have a strong support group, finding new techniques to help manage your symptoms and emotions on your own can offer even better outcomes for your epilepsy management.

This coming fall, the Epilepsy Foundation will be offering the Chronic Disease Self-Management Program across our network. As a part of this self-management program, we will be addressing mental health and epilepsy and ways to maintain a better and more fulfilling life. More information about this self-management program will become available in the coming months.

This program is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $100,000.00 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.

3. Managing Epilepsy Well Network (MEW)

Have you heard of our Managing Epilepsy Well Network? The Managing Epilepsy Well Network (MEW) is a team of people who care about the health of people with epilepsy, their friends and family, and their caregivers. MEW Network Members come from U.S. universities, community-based organizations, and the Centers for Disease Control and Prevention. Network Members work together to improve the quality of life for people with epilepsy.

If you or someone you know is struggling with epilepsy and mental health, there are resources that can help.

MEW offers several mental health programs to help people with epilepsy and their caregivers manage anxiety, depression, cognitive problems, and more.

For example, PACES (Program for Active Consumer Engagement in Self-Management) can be completed in-person or by phone and helps improve confidence, depression, and quality of life in people with epilepsy.

In addition to the PACES program, MEW has much to offer for anyone with epilepsy who wishes to manage and improve their health.

4. Support Groups

Sometimes, the best way to feel better is to talk to someone about our problems. Often, the best people to speak with are others who have experienced similar situations.

Joining an epilepsy and seizures-related support group is a great way to make connections and talk about your feelings out loud with others who get it. The Epilepsy Foundation offers groups for parents and caregivers, adults and teens, children, as well as bereavement services for those who have lost someone. Our local offices can also point you in the direction of the best support group for you.

If you have questions related to mental health or epilepsy, we encourage you to connect to our 24/7 Helpline online or by phone at 800-332-1000. You can also reach us en español at 1-866-748-8008.

Authored by

Kaitlyn Gallagher

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