Humans of ME/CFS

When we were growing up, you could always find us running around at a park, traveling the world with family, playing sports, volunteering at church, and dreaming big. Eventually, both of us went into high-energy careers, one as a sound engineer and the other as a missionary.

Then it all went wrong.

(Corey) 7 years ago, I started having trouble handling the pressure of my job. It was during an exceptionally demanding year and I could tell it was leaving me running on fumes. The more I tried to keep up, the weaker I became. Until finally, I could feel my body and mind crash. I became mostly bed-bound, barely able to handle motion, touch, light, and sound. Panic attacks and exhaustion became a vicious cycle. Brain fog made it impossible to care for myself and I wondered if there was any hope of recovery. What was happening to me? It was such a shock to my doctor and family, and it took a long time for them to understand that I am not lazy, I really am sick!

(Heather) Watching Corey go through what she went through from the other side of the world was confusing and heartbreaking. For years I tried to “snap” her “out of it” and get her going again like old times. I just couldn’t believe she could be that sick. I couldn’t believe until it happened to me. Four years ago, after a busy season of ministry, I took my usual month off to recoup, but found it strange that I felt even more exhausted after than before my break. I pushed on through another busy season and eventually found myself barely able to walk, eat or even sleep. It felt like I had a constant flu. Having Corey there with me during the worst moments was a huge blessing. I don’t know how she made it through those first years without me because I know I couldn’t have done it without her!

For us, burnout soon turned into ME/CFS which forced us to quit our jobs and our lives. At its worst, we couldn’t even form complete thoughts. Over time, the disease has become less debilitating. Corey has gone back to work as a full-time professor and film sound engineer. When she’s not at work, however, she is usually sleeping. Heather is still unable to work, but is now married and much more active than before.

Grief is hard for us. It’s as if we’ve died but are still around with the memories of how things were and what we could do. When we dream, we run everywhere! No more “I’m-trying-to-run-but-can’t-seem-to-move” dreams. That happens enough in real life. We miss our friends, the food we used to eat, and simply how we lived.

It’s scary, but we thank God we have each other. We are also blessed to have the doctors, family, and friends who have loved us and cared for us.

For all of you struggling with ME/CFS, we are with you. Here’s to a cure!