Living with ME/CFS

Adhira and Neel are a mother and son who both have ME/CFS. Together, they share their story.

Currently, I think of life as before or after ME/CFS. Prior to being diagnosed, my experience with disease and or illness of any sort was rather unremarkable. There just was never time for that sort of thing. Fortunately, as a pharmaceutical executive, there was always someone available to get you through a case of the sniffles or a pesky weekend bug. The phrase “keep it moving” was the name of the game.

At first, we had no idea what was wrong with our daughter. It was her senior year in high school when she became ill and started missing school. Her illness presented with extreme fatigue and caused an inability to attend school. She pretty much couldn’t get out of bed in the morning. Over time, other symptoms also appeared, or, they were simply recognized. It looked like a viral illness of some kind.

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.