Grief and Resilience with our SRF Patient Advocacy Group

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Heather Bensch is a Certified Christian Life Coach, a Community Activation Team leadership member and volunteer for SRF, and caregiver to her daughter, McKaela. In addition, Heather is our very own SRF parent facilitator of the SRF weekly Zoom meeting. She has given our community a safe place to share, talk and heal.

Nancy Kessler is an educational specialist, school and community psychologist, Board Member for SRF, and caregiver to her sister, Caren.

February was Rare Disease Month, and an important issue facing our SRF community is Mental Health and Well Being. Heather and Nancy talked with other caregivers about “Grief and Resilience” at the weekly patient advocacy meeting. Having strategies to cope with these feelings will help all of us be available to care for our loved ones. Following are some of the topics we discussed as well as tips to make necessary changes.

Thought-Provoking Questions & Tips to Help You Navigate Your Grief 

Recognize your grief.

What does grief look like to you? We know that grief looks different for everyone and is individual. Grief does not have an expiration date when it comes to Rare Disease and SYNGAP1. For many, grief feels like isolation, and some experience feelings that can oscillate between anger and sadness. Grief can show up anytime and can be anticipatory. Denial is also a part of the grieving process. Have you been processing through (or covering up) your grief?

What is resilience for you?

Suffering does not discriminate and resilient people are good at choosing where they put their attention. Resilient people ask, “Is what I am doing helping me or harming me?” Are you choosing to focus on the positive or the negative?

How do you manage stress: self-care or self-comfort?

Self-care is taking care of yourself for the long haul (e.g., exercise, nutrition, art, reading, church). Self-comfort is short term and temporary (e.g., comfort foods, binge watching TV, shopping). How do you find balance and find self care in your life? Think about what is important to you and what steps you can take to care for yourself for the long haul and not just in the short term.

Should you seek professional help?

How do you know if you should find help with a therapist? How do you get out of a deep depression? Is your depression affecting your daily functioning? If yes, it is time to get help.

Tips and Thoughts:
  • Accept change
  • Keep a sense of humor
  • Be intentional and meaningful
  • Practice gratitude
  • Connect with others to help avoid isolation
  • Create your own toolkit/checklist

Join us for our next online Patient Advocacy Group Meeting to gain support and connect with others living a life similar to yours. We meet via Zoom the last Tuesday of each month, 5PM PT / 8PM ET. See picture above for monthly topics and use this link and meeting information to join in on Zoom:  Syngap.Fund/SRFFam Meeting ID:  972 0059 2178 & Passcode: 848417

We also found the below resources helpful and hope you will, too!

Janie Reade’s book: “MORE OF EVERYTHING”

Global Gene’s Article: Caring for Yourself and Your Children

Becky Sansbury’s book: “AFTER THE SHOCK

Courageous Parents Network blog:  “Super-powered Grief” by Daniel DeFabio