Humans of ME/CFS

As a youngster, I was said to be precocious, compassionate and active. I was a first-chair musician, won two bronze medals in Junior Olympic Nationals for swimming and was a good student. I was happy and playful. I received a BA in Psychology, and a Master’s in Counseling and Educational Psychology. As a licensed psychotherapist, I had a successful private practice.

In March of 1992, I became ill with a flu-like virus at the age of 24. I developed unrelenting fatigue, joint pain, swollen lymph glands and severe headaches. I ended up on short-term disability for a year. I would sit on the floor and try to hold a hair dryer, but my arms couldn’t hold it for more than a minute. I was diagnosed with CFS, but everyone thought it was just in my head. I have a very strong will and began to feel better, though never felt as good as before my illness.

For many years, the symptoms would wax and wane. I accommodated and hid my illness fairly well. I worked part-time and would sleep on the weekends. Giving up was never an option. I was raised with the mantra “Whatever the mind can conceive and believe, it can achieve.” My partner started doing more and more. Pretty soon, she was doing all the cooking, cleaning and errands. I was using what little energy I had to keep working. I had to take a “sabbatical” for eight months in 2003. We couldn’t afford for me to quit working part-time, so I returned to my private practice. I had stopped socializing because I never had the energy.

I’ve had this disease for 23 years. The symptoms have changed a bit, and I’ve gotten really good at hiding it. I even learned how to detach from my body so as not to feel the pain. Last year was IT for me….I couldn’t continue working. Nothing I tried helped….I finally reached my breaking point. I never knew this was a progressive disease, but it is. I now have a neurological disorder. Testing revealed severe abnormalities.

At the age of 47, I sometimes get lost going to familiar places, can’t find the right word, and have difficulty with calculations/puzzles/or simply understanding what someone says. My CPET testing shows that on a cellular level, I don’t have enough energy to do simple tasks (washing the dishes, vacuuming). I went on disability in October 2014. I tried to return to work in January 2015, but only lasted six weeks. I now receive long-term disability, but the company says I have to prove I am still disabled after two years. I don’t have good medical care because there are no doctors in my area that are even interested in learning about this disease.

Patients like me really need two things: 1. Understanding and acceptance of this disease by the medical community and the public (a new name too); 2. Research to invest in treatment. Please Help!!