Hi, I’m Kim Moy. I’ve been a caregiver for nearly 20 years, which includes caring for my husband, who is now disabled from ME/CFS, while also raising our two school-aged children and working full-time management jobs. For several years, I also shared caregiving responsibilities for my elderly parents with my sister until they passed away a few years ago. My mother suffered from Alzheimer’s and died of COVID, which she caught at the nursing home she lived in. My father died a few months later.
 

What I’ve found as a chronic illness caregiver: 

 

• It’s tough to find all the necessary info & resources to be an effective caregiver. There’s no centralized place to find what we need to know about all the different aspects of caregiving (such as strengthening your resilience, navigating multiple medical and disability systems, and retrofitting your home).

• Caregivers are overwhelmed, have trouble with self-care, and face burnout.  We need to take on new roles as caregivers and patient advocates, usually with no training.  The emotional weight feels so heavy. And there’s grief for the loss of the life you had imagined for your loved one, yourself, and your entire family.

• We’re often lonely and isolated. It’s often hard for others to fully grasp unless they’ve traveled a similar journey.

After leading a support group for caregivers of loved ones with ME/CFS, Long COVID, and related illnesses for the past 5 years, I’ve launched Caregiver Wisdom to deepen my efforts to provide even more support, advice, trustworthy resources, and community connection to the growing numbers of family caregivers of people with ME/CFS, Long COVID, and other debilitating chronic illnesses. 

 

Why launch Caregiver Wisdom? I’m not a doctor or medical researcher, so I don’t have the skills to help solve and cure people with ME/CFS, Long COVID, and other debilitating chronic illnesses. But I can contribute to our overall community by sharing caregiving lessons I’ve learned over the past nearly 20 years from my own challenging life experiences, reading stacks of books, watching countless webinars, listening to dozens of podcasts, working with three coaches, three therapists, and my mentor who’s a Zen priest, as well as talking with other chronic illness caregivers who have become my good friends and support network.

I’ve started creating a guide map to become a resilient and joyful caregiver, to help others navigate the challenging chronic illness caregiver journey. The journey has many ups and downs, twists and turns, and you often lose sight of the path because it’s so gnarly. It’s easy to feel lost, lonely, overwhelmed, unsure, demoralized, and depressed.

Like a journey traversing through mountains, parts of the trip can be tough and treacherous. There are also moments of beauty, joy, and personal growth if you’re present enough to see them. It’s helpful to follow a map through this rugged wilderness. And going on this difficult journey is easier with the good company of fellow travelers.

I hope you join me in a movement to fight the epidemic of chronic illness caregiver burnout and loneliness. If you’d like to contribute your ideas, expertise, writing, other skills, connections, donations, other resources, and/or your presence at a support group meeting, please reach out to me at kim.mecfs@gmail.com.

Take Care,

Kim