Challenge of the Year: 2020

2020 Challenge of the Year: Combating Isolation

Read our Epilepsy and Social Isolation Survey Highlights

How Does Epilepsy Contribute to Social Isolation?
 Recently, there have been several studies supporting the emergence of a “loneliness epidemic” in the U.S. and beyond. This exists despite (and possibly because of) the internet, social media, and other technological advances intended to help us feel more connected. Epilepsy can add to this isolation by putting up a number of barriers to social engagement. This includes the following: 

  • Lack of Transportation - For those whose seizures are not fully controlled, the inability to drive and the lack of comprehensive, reliable, and affordable transportation options make it very difficult to get to places where face-to-face social interaction is possible.
  • Depression and Anxiety - Both depression and anxiety disorders are more common among people with epilepsy than in the general population. Both can lower your energy and motivation to be social and reduce your comfort in social situations.
  • Seizures and Side Effects - For those with frequent seizures, the safety risks of having a seizure outside of the controlled environment of the home are often enough to prevent them from regularly getting out of the house. In other cases, people simply don’t feel well enough to socialize because of drowsiness, fatigue, headache, nausea, and other medication side effects.
  • Fear of Seizures - A seizure in public or in a social setting can be embarrassing, and if others don’t know how to respond correctly, it can be dangerous. Worries about how people will react and fear of inappropriate seizure responses (e.g. calling 911 unnecessarily, injury from incorrect seizure first aid, etc.) can reduce one’s willingness to leave the home.
  • Stigma - Unfortunately, many people still don’t understand epilepsy and hold a variety of harmful beliefs about those who have it. People with epilepsy frequently report being bullied or harassed, being a victim of discrimination, or having lost friends after being diagnosed. The persistent threat of stigma can be a strong deterrent to social activity.
  • Lack of Employment - For most people, the workplace is the single largest source of regular social interaction outside of the family. Regardless of whether you’re close friends with your co-workers, employment provides an ongoing opportunity to exercise social skills and a reliable source of essential human contact. Difficulty in obtaining and maintaining employment (due to seizures, associated conditions, stigma, and lack of transportation) deprives many people with epilepsy of this steady source of socialization.

A variety of strategies and resources can be used to break through some of these barriers, increase social interaction, and build a strong social support network. This includes the following: 

  • Education (e.g. college, trade schools, etc.)
  • Vocational rehabilitation services (to help with employment)
  • Volunteering
  • Support groups
  • Epilepsy Foundation of Michigan programs and events
  • Other health and disability-focused agencies
  • Classes, clubs, and team sports
  • Religious communities
  • Group living arrangements (e.g. living with roommates, cohousing, intentional communities, etc.)
  • Learning to use public transportation
  • Social media and online communities
  • Social skills training
  • Building self-advocacy skills
  • Medical identification and seizure action plans
  • Seeking better epilepsy care (to improve seizure control and/or reduce side effects)
  • Counseling with a mental health professional

If you need help finding any of these resources in your local area, please don't hesitate to call us at 800-377-6226. 

Through our 2020 Challenge of the Year, Epilepsy Foundation of Michigan will raise awareness of the problem of isolation among people with epilepsy and provide effective strategies for overcoming barriers to social engagement. In doing so, we hope to strengthen connections within the epilepsy community in Michigan and enhance integration with the larger community. Efforts will focus not only on people with epilepsy but on caregivers as well. If you have ideas on how to combat isolation or you'd like to be involved in our efforts, please contact Russ Derry at 800-377-6226 ext. 1302 or

Learn more and connect with others through these 2020 programs and events

  • Epilepsy Innovation Conference - taking place from June 1 - June 5, this virtual conference will feature a session on how technology can support social connection and quality of life

  • Back to School Conference - taking place on August 1, this conference will offer networking opportunities for parents

  • Wellness & Epilepsy Conference - taking place on November 13 - 14, this virtual conference will include networking opportunities and content related to combating isolation

  • Learn & Share Conference Calls

  • Open Houses - Open Houses provide an opportunity to meet the staff, learn more about what we do, and connect with others who are living with epilepsy

  • Call & Connect Network - phone and Zoom-based discussion groups for adults with epilepsy, parents of children with epilepsy, and young adults with epilepsy that feature conversation, problem solving, encouragement, and sharing of resources and strategies

  • Support Groups - there are several support groups and online communities in Michigan

  • Project UPLIFT - depression can be a major barrier to social engagement; Project UPLIFT is an 8-week, phone-based program for adults with epilepsy designed to build skills for managing depression

  • Epilepsy Foundation of Michigan Facebook Group - private Facebook group for people with epilepsy, family members, and friends in Michigan

  • Stroll for Epilepsy™ - five opportunities across the state to join the epilepsy community for an inspirational walk while raising funds to support the Epilepsy Foundation of Michigan's mission

Stay tuned - we hope to add more programs and services to help promote social connection and support. 

Additional Resources