Humans of ME/CFS

In 1995, I was studying at university. That summer I had good grades, but during the summer of my second year when I had to read about brain research I could not understand the research no matter how I tried. I went back to university for my second year and struggled. I had difficulty remembering where I parked my car. I needed my degree so I could work in a calmer job.

I managed the last two years doing research and presenting papers, but at a great cost. My doctor did not diagnose me until 1997. I was in pain, foggy headed, and exhausted. Everyone said I had depression, which I did not have. My husband was dying with early Parkinson’s and there was no help, so I managed on a prayer and a wing.

I found a job three days a week as a psychologist for a short time, and then was offered another contract lecture job. Driving had become a nightmare and I now had hyper-vigilance. I could not renew my job contract as I was too ill. I was too ill to be with my husband in the hospital as he was dying.

My two girls have ME/CFS. There is a bigger backstory to all of this. My doctor nearly cost me my life when I went to him with changing symptoms. He said it was ME/CFS when my legs swelled, and he ignored it. Fortunately, I managed to see a private doctor who straight away diagnosed a blocked defending artery and he operated within a few weeks. This part of my story is important – that doctors need to start understanding that ME/CFS is not the only story a patient presents. We are not hypochondriacs.