Living with ME/CFS

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 16^th 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.