Humans of ME/CFS
I was 31-years-old, in the middle of my busy life. I was married and had three very young children. I had three bouts of strep throat in a six month period. On the fourth episode of flu symptoms with a severe sore throat, nausea, chills, and swollen glands, the doctor said the tests were negative for strep, but positive for Epstein - Barr virus. He assured me I would probably be up on my feet and feeling well in a few months. A few months turned into three decades.
However, the first six years were the worst. Imagine every day of your life facing a severe flu with no relief in sight. When entering my sixth year of illness, I thought I was finally ready to let go of this life. I tried to leave, but was brought back only to be in the same miserable place. Due to an amazing immunologist and my own perseverance, I made it over the hill from this insidious illness to a more tolerable form of chronic immune illness. I refuse to call this disease the insensitive name of 'CFS.' It is a chronic immune dysfunction disease.
I wish that I could have lived a healthy life, chased fire-flies with my children, or accompanied them on class trips. I wish I had been there when my boys received boy-scout badges and I wish I could have been my children's guide into the adult world. Rather, I had to depend on incompetent sitters and a husband who couldn't cope with the situation. Who could cope with this situation? All we managed to do was to survive. I have nothing positive to say about this illness, except that I barely survived.