Personal Story: Jennifer Warner

Jennifer Warner describes her road to CFS diagnosis and looks to her life ahead with a marathoner’s determination.

I remember the day I went to the doctor for the sixth time in one month because of overwhelming fatigue and brain fog. It was almost two months to the day that I had successfully completed the New York City Marathon and eight months from the time that I had started producing a documentary on a very difficult and controversial subject. Both events now over, I thought that I would be feeling better, but my body and mind kept screaming at me to stop, close my eyes, sleep. What was going on?

I had been a TV producer for ten years and a highly active person my entire life. Friends and family teased me that I walked faster than most people ran; that I was a natural-born vegetarian; that I was the healthiest person they knew. Though I sought out successful treatment for anxiety in my late twenties, I still kept to my routine of running or walking to relax myself; to give my body the chance to catch up with my mind which was always on the move. I was an avid reader and writer. I had a thought and an opinion for everything. I enjoyed talking about current events or the latest movie I had seen. Now I could barely get out of bed in the morning. At work, I would read and re-read a script because I couldn’t remember or comprehend what I had just looked at. Books and movies overwhelmed me. I told my partner “I think I’m getting stupid.”

On this particular day, the doctor who had seen me multiple times over the past month looked exasperated and ordered a blood test. “People who run marathons don’t have cancer” he said as if to answer some unspoken question. I looked him in the eye and said “I might not have cancer, but I definitely have something.”

And so began my journey from specialist to specialist: hematology, rheumatology, infectious disease. I had a CT scan, a surgical lymph node biopsy and more blood tests than I can count. Nothing was coming up to explain what was wrong with me.

I left TV production to start my own company where I could control the hours and stressors. It didn’t help. I tried to keep exercising as I had been, but the fatigue and joint pain made it impossible. The day after exercising, I couldn’t think straight, and all I’d want to do was sleep. I couldn’t believe my life had come to this point.

Eventually, my primary care physician recommended me to an MD with a specialty in Chronic Fatigue Syndrome. She carefully reviewed my lengthy chart and told me matter-of-factly, “This is not all in your head. You definitely have Chronic Fatigue Syndrome, and we’re going to do something about it.”

Truthfully, before I was diagnosed, I always had a bias against the diagnosis of CFS, reasoning that everyone in our modern world is "chronically fatigued." But this was my comeuppance. I understood what it meant to be so exhausted you wanted to cry; so foggy that simple tasks seemed overwhelming and confusing; feeling as though your brain and body were playing a cruel joke on you. Having a diagnosis—even one that was difficult for me to hear—helped me come to terms with myself.

Now I take it day by day. Supplements, healthy food, moderate exercise and knowing when to stop (and I mean really stop) have helped me move forward. Finishing the Marathon was a great accomplishment that took physical and mental discipline. I’m using those same skills to manage my CFS diagnosis. It’s the biggest challenge of my life, but I know I can do it.

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Jennifer M. Warner is a former TV producer and currently owns a baked goods company for people with food allergies called moonface & wally™. She lives in Brooklyn with her partner.