Last week we dug into the ins and outs of mental health and epilepsy. Mental health issues can easily sneak up, and a seizure diary is one way to track whether stress or anxiety are impacting the number or duration of seizures for anyone living with epilepsy.
Today we’re continuing our series on mental health by going to the experts for tips, techniques, and resources for managing the stress that often comes with epilepsy—especially during this time of COVID-19.
We sat down for a virtual chat with Anastasia McCargo, Clinical Director of the Epilepsy Foundation of Greater Chicago, about ways their organization raises awareness and provides services for epilepsy education, mindfulness, and other mental health initiatives.
This Q&A interview has been lightly edited for clarity.
What’s your role at the Epilepsy Foundation of Greater Chicago, and what mental health and educational programs do you offer for people with epilepsy?
I am the Clinical Director of the Epilepsy Foundation of Greater Chicago. We are very excited to launch a new mental health initiative within the Foundation with the creation of our Clinical Department in March 2020.
We offer supportive mental health wellness care in the form of general epilepsy support groups that meet 3x per week, a psychotherapy skill-building group that runs for 6 weeks, which focuses on addressing the unique challenges of managing symptoms of depression and anxiety along with an epilepsy diagnosis.
We also offer a parent/caregiver education support group that meets 2x a month, a Train Your Brain memory group that meets 1x a week, and a Women and Wellness group that meets for 6 weeks. We also offer vocational support through one-on-one sessions as well as a weekly email group. Clients can access one-on-one counseling services if they are struggling with symptom management and need extra individualized support.
Our Kids and Teens Club has been meeting virtually and offering ways to stay connected through yoga, improv and other fun classes. Our case managers continue to be available for access to care questions and resource referral. Our education programs continue to focus on increasing seizure recognition and training in appropriate first aid. We are fortunate to be able to offer all of our programs and services virtually for the time being.
What are some of the mental health challenges that people with epilepsy often face? What kinds of support and services are most helpful?
It can be difficult managing a new diagnosis of epilepsy for anyone! There is a great deal of fear related to the unknown. What will happen if I have a seizure? Will I be safe? How will I work? Drive? Take care of the people I love? Many people with epilepsy struggle with depression and anxiety while trying to adjust to a “new normal” and figuring out how to live a meaningful life with a chronic medical condition.
EFGC is here to assist and support our clients and families on this journey. Accessing support can be so helpful to those feeling alone, and that can come in many forms. For many, learning about epilepsy and knowing the facts can be comforting. It is also important to connect with others who can share similar experiences which can lessen the feeling of being alone. Joining a support group, attending an event with others, and sharing stories can all be meaningful experiences.
Could you describe what mindfulness is, how to practice it, and why it’s beneficial for people with epilepsy?
Mindfulness is defined as the quality or state of being conscious or aware of something. We use the practice of mindfulness in our work with clients on a daily basis.
The benefit comes in being able to focus on the present moment and increase self awareness. When we can shift our focus to the now, many of our worries about the future and anxieties related to the past fall away and we experience a happier state of being, being reminded what we can control is ourselves and our present mindset. Research also supports the idea that decreasing stress levels and increasing self-awareness can oftentimes lead to a reduction in seizures.
What’s the story behind how your mindfulness sessions for people with epilepsy got started?
Conor Klusendorf, who was our intern and is now our part-time clinician, had a passion for bringing mindfulness practice to our clients and our services. His personal experience and his previous work with veterans offered him the opportunity to see the benefits first hand and he was excited to share his knowledge with our clients. There is a great deal of research that supports the use of mindfulness techniques in decreasing symptoms of depression and anxiety; it was a natural fit to incorporate into our programming.
How can people without epilepsy—including caregivers, mental health professionals, and the general public—best assist people with epilepsy? What’s something they might be unaware of but should know?
Education is key! Knowing the signs and symptoms, becoming familiar with different seizure types (most people do not know there are over 20 different types of seizures and they all can present differently) can help others help people living with epilepsy. The more we know the more we can help!
Offering support in a safe, nonjudgmental way is also very important. People living with epilepsy can live healthy, engaged and satisfying lives in the same way people not living with epilepsy can. Supporting this mindset with encouragement and celebrating success is a great way to offer assistance.
Has COVID-19 created additional mental health challenges in your community? If so, how?
Absolutely. Moving all of our programs and services to a virtual platform has allowed us to continue our work, connect our clients to resources, and offer support and a continued sense of community in these challenging times. We also know that people everywhere are reporting increased symptoms of depression, anxiety, loneliness, and substance abuse.
This a natural response to living through a pandemic with increased isolation, decreased socialization, health and safety worries, and financial stress. We miss seeing our clients face to face! There is a different level of comfort and support we receive by being near others, engaging in eye contact, and being able to interact socially as a group. We are very excited to be back in person when the time is safe.
What strategies or tips might you suggest to improve mental health during the pandemic?
Self-care is very important. This means sleeping 7-8 hours a night, eating healthy and nutritious food, and getting exercise daily. Even a short walk around the block can help. If you are homebound, there are many free exercise videos available online to keep you moving. Exercising your brain is important too. Engaging in relaxation and mindfulness exercises, doing crossword puzzles or sudoku can keep minds engaged and moving.
Limit news exposure, spending all day catching up on the latest events can be anxiety provoking. Connect with friends and family safely. Regular phone calls, virtual meetups and socially distant in-person visits can boost mood. Practice gratitude! There are many things we cannot control these days, but it can be helpful to remind ourselves of the things we can control, like our attitude, taking care of ourselves, and recognizing the small joys in life.
Do you have any interesting anecdotes about a mental health or mindfulness technique that one of your clients has pioneered on their own?
Prioritizing life’s responsibilities. One client described visualizing herself prioritizing her life as if she is juggling rubber or crystal balls. One she can drop, the other she makes sure to give attention and care first and foremost.
Where can we learn more about Epilepsy Foundation of Greater Chicago and the services you offer?
A: Visit our website at http://www.epilepsychicago.org/