Voice of the Patient
The “Missing My Life” video shows a woman with ME/CFS and what her life is like as she goes through part of her day. It shows some of the everyday events that she misses as she manages her illness.
El video “Perderme mi vida diaria” muestra una mujer con encefalomielitis miálgica y el síndrome de fatiga crónica (SFC/EM) y cómo es su vida durante parte del día. Muestra algunos de los momentos cotidianos que ella se pierde mientras lidia con su enfermedad.
I am a physician and had not heard of ME/CFS before I got it. I can’t tell you the specific day in August 1986 but many people with abrupt onset can. I didn’t know what hit me – it was awful. It was like a severe flu. In addition I could not tolerate loud sounds, bright lights, and my large leg muscles felt like jelly. I had no energy, no stability, and started to have sleep problems.
Right before I got sick, I was an international athlete and was going to graduate school. I was used to being busy and my body was reliable. I distinctly remember when I first became ill. There was an ice storm in my town and it shut down the power in my house. The crawl space became flooded and we spent many hours bailing out the water. The next day I woke up with the worst sore throat and felt sick overall, but I just kept going, thinking I would get better the next day. I developed bad vertigo, and also had fatigue and sleep problems.
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.
It all happened around my 16th birthday. I started to throw-up, had a sore throat, and was very tired. My pediatrician did a test to check for mononucleosis (also known as mono) but it came back negative. Next I went to an ear, nose, and throat doctor for a second opinion and they did more blood work and eventually diagnosed me with mono.
Disclaimer: The opinions and conclusions on this web page are those of the patients and other contributors, and do not necessarily represent the official position of the Centers for Disease Control and Prevention (CDC). The names of some contributors have been changed to protect their privacy.