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. If you did not require an IV (still no excuse) or surgery, then it was business as usual. Yes, I have been described as Type A, but I prefer words such as “driven” and “grateful for the opportunity to grow” (completing a Master’s, Ph.D., and JD) and be creative in what was a rewarding and challenging journey.
Although I had worked globally and been relocated more than 30 times, the last career relocation was different. At first, I thought it was the change from frantic 16-hour workdays as a “road warrior” to a calmer existence as an academic at a rural college. Or, perhaps it was adjusting to leaving a perpetually sunny climate for a somewhat cooler climate. To this day, I am not sure. However, I do know my symptoms started quickly with a sinus infection and did not stop. Each month, there was something new. I would start to get tired for no reason and had a cold that turned into walking pneumonia. Over time, I also started to have chronic migraines and vertigo that caused numerous acute injuries to various parts of my body as a result of falling. I could not sleep, experienced debilitating fatigue, swollen lymph nodes, and unbearable pain in my hands and limbs. The most frightening part was experiencing my most dreaded symptoms, memory and related cognitive deficits. Seriously, how was I going to manage my work as an editor, researcher and professor? Well, I learned to be crafty and ingenious in faking being “normal” until I could not.
Life after ME/CFS. Well, I was not unlike the many who met with physicians for more than a decade only to be told it was my imagination or provided with a strange diagnosis like emphysema – and I have never been a smoker. Knowledge is powerful in managing this disease and, after a significant amount of research, I finally found the best medical team. The first thing I thought after getting my diagnosis was that someone believed me and “got it” without superfluous explanations.
Believe me when I say my ME/CFS journey has been extremely difficult. Most of my friends don’t believe I am sick (faking that I am OK has become a habit) because, I don’t look sick to them. They do not realize it takes me half of a day to prepare for a couple hours of social interaction. However, I learned as a healthcare professional that no one likes the “sick girl,” so I smile and “keep it moving.” Over the last 17 years, it has become harder to hide my symptoms. The ability to complete simple tasks like showering, reading, writing, meeting deadlines, walking, or driving are embarrassingly difficult. Most days, I am bedbound, and the personal costs have been immeasurable (extended isolation, losing clients, career, and social life). Unfortunately, when I try to be my old “normal,” I fail more than I win.
Not all ME/CFS patients are the same and there are different symptoms for different people. I realize you have to get to know your symptoms because your job is to manage these symptoms without initiating the dreaded “crash.” The introduction of the coronavirus has only added an exhausting layer to this complex chronic disease.
I find it takes strength knowing a chronic disease that is not curable is actually controlling you, and that there are physical, as well as mental costs to pay for trying to be “normal.” For this reason, I focus each day on managing the symptoms ME/CFS presents. I still promise myself to be driven and passionate but, mostly, to accept my “new normal.”
Disclaimer: The opinions and conclusions on this web page are those of the patients and other contributors, and do not necessarily represent the official position of the Centers for Disease Control and Prevention (CDC). The names of some contributors have been changed to protect their privacy.