Liz's Story

I remember the day I got sick—Monday April 15, 1991—the day my life changed. At first I thought it was the flu or food poisoning, but I couldn’t kick it. I had a fever and an upper respiratory infection that required antibiotics, but nothing else helped. I crawled into bed and stayed there for about two-and-a-half years.

Before ME/CFS, I loved hiking, backpacking, anything outdoors. I worked full-time, lived independently, and attended night school at Georgia State University. Once I got sick, I couldn’t work and I had to be in bed. It felt like I had a chronic case of the flu: exhaustion so great I could not move; headaches, dizziness, muscle aches, especially in my legs; and profound exhaustion and mental fogginess, so I could not function. I was sensitive to noise and light. I was amazed that I was so sick physically and yet doctors didn’t know what to do.

After seeing seven doctors over the course of a year, I finally got a diagnosis. Once I had the diagnosis, the name “chronic fatigue syndrome” did not sound right. I had been so sick and yet the name didn’t fit what I had. It didn’t describe the urgency of the symptoms.

I remained bed-ridden for two-and-a-half years before I could slowly get out of bed and start to function. By function I mean baby steps – getting dressed, being able to go outside.

It bothers me that articulating this disease is so hard. Sometimes I say it is like “gas not getting to the engine,” or that “the circuit breaker shuts off and there is no power to switch it back on.”

In 1998 I was able to get an apartment with a friend, but later I had to move back in with my parents. I couldn’t do simple things like drive or buy food; I was confined to bed for days at a time.

I have lived 27 years with an illness that has not been treated or gotten better. I spend over 80% of any day in bed; my nights are 12 hours long. For some of us with ME/CFS, when we get sick, we stay sick.

Some mornings, my mother will take one look at me and say, “You’ve gotta quit drinking.” As if I’m suffering from a hangover. I probably look hungover, and I feel hungover. But I don’t drink. It’s not a hangover, it’s ME/CFS. My mother knows this of course, but she also knows that the drinking remark will make me laugh. Sometimes you’ve just got to laugh about it or else you’ll go crazy.

What I want is for doctors to understand more about ME/CFS. The 2015 Institute of Medicine Report on ME/CFS should be required reading for all physicians. Medical professionals need to see the disease from the patient’s perspective. They need to understand what it is like to live with ME/CFS. They need to understand the burden of the disease itself and to end the stigma attached to it.

ME/CFS patients are working hard on two levels. The first one is to simply heal— to regain some semblance of the active lives we used to lead. The second task is to fight for an end to the stigma. We are not lazy or tired or unmotivated — we are sick. Doctors need to see that. Patients deserve to be treated with respect.