Humans of ME/CFS
My journey with ME/CFS began over 25 years ago. At the end of August 1990, I got an upper respiratory infection that I never fully recovered from. Five months later, I received the diagnosis of Chronic Fatigue Syndrome over the phone. There was no follow-up visit scheduled. I was cut loose to deal with a poorly understood and ultimately devastating illness all on my own. I put my dream of going back to school on hold and saw multiple doctors over the years. We tried many different but all ultimately ineffective treatments.
In 1996, I was able to get on the Internet. I used it to research this illness, connect with other people with CFS/FM and became an activist with the Worldwide Electronic CFS/FM Action Network (WECAN), a now defunct organization. After about five years, I became quite discouraged by the lack of progress. (I was naive to the workings of politics and healthcare).
At the time, research consisted of epidemiological study after epidemiological study, finding new diagnostic criteria and changing the name. I decided to back off from all that to see if it might be emotional (or psychosomatic) issues that were keeping me ill, as some had suggested. I read self-help books, wrote in my journal, and meditated. It did not take long for met to know that this illness is not just in my head.
At the same time, I raised my girls, tried working part-time and began taking one or two classes a semester. I was unable to continue working because of the pain and fatigue. I continued to see doctors, but my symptoms remained unaddressed. The naturopath I am seeing now says that ME/CFS is a waste basket diagnosis, but she is really the first doctor to address what is going on in my body. Today, although I am only four classes away from an associate’s degree, I have made the difficult decision not to go back to school. The last five years have been extremely stressful for me. I had become complacent and forgotten that I need much more rest and self-care under stressful circumstances. Consequently, I crashed very hard. I am now more limited than I have been at any time since my diagnosis.
Unfortunately, we have not come very far from where we were in the late ’90s. This year, a new name has been recommended and more simplified diagnostic criteria have been suggested. Even after all this time, I only know two people who understand what I am going through. Both have a chronic illness. Despite all this, I do my best to focus on what is good in my life. I find things to be grateful for every day. I still have hope that I will be able to recover at least to where I was five years ago. I am doing the best I can to take care of myself. I avoid as many toxins as I can, eat organic, unprocessed foods, and am learning to manage my more limited, new normal.
