Right before I got sick, I was an international athlete and was going to graduate school. I was used to being busy and my body was reliable. I distinctly remember when I first became ill. There was an ice storm in my town and it shut down the power in my house. The crawl space became flooded and we spent many hours bailing out the water. The next day I woke up with the worst sore throat and felt sick overall, but I just kept going, thinking I would get better the next day. I developed bad vertigo, and also had fatigue and sleep problems.
I went to the school health clinic and had a lot of tests done. All my tests came back fine— only months later I was found to have mononucleosis. Over the next two and a half years I had mono two more times, and each time it took months to recover. I kept going to doctors and specialists such as infectious disease doctors, cardiologists, and rheumatologists. It was grueling to go through this process and some of the doctors didn’t want to see me because there was nothing they could say or do. Finally, three years from my original illness, I traveled out of state to see a specialist and he diagnosed me with ME/CFS. I continued to see him once a year until I found someone local who wanted to be my doctor and work with me.
My illness put a stop to my busy life. The fact of not being able to do things I used to do contributed to a dark time in my life and it was isolating too. I would think, “do I lie on the couch?” or “should I try to make something to eat?” And it was hard on my family. My husband would tell you that he felt horrible for me, but at the same time, his needs were not being met and he was grieving. ME/CFS can create a wedge in a marriage.
Once I got diagnosed and started treatments my symptoms began to improve, but it still took me another few years to learn to manage my illness. There was one big event [first time I got sick] and now my illness is cyclical. I look at my ME/CFS in phases. The “crisis” phase is when my body does not function properly. Energy is running the wrong way and I need to be as still as possible. I can’t move because I need to conserve my energy. The “emerging” phase is when I come out of crisis and any energy I expend needs to be on something that gives back to me. For example, I might take a shower rather than do house cleaning, then I need to lie down. Next is the “stabilization” phase in which I can do some things but I need to be very cautious about any overexertion. Then is the “integration” phase, when I can begin to slowly build my strength back. My symptoms change over time and I have learned to be aware of my body and ask each day “how do I feel?”
Although everyone’s experience with ME/CFS is different, for me, this kind of careful management has been essential to helping me complete my graduate program, work part-time in a career I love, and start a family. ME/CFS has taken so much from me, but it also forced me to get really clear about what matters most in my life, and taught me how to let go of the rest. And, most importantly, it has helped me find a sense of self-worth, beauty, and meaning beyond my physical capabilities.
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.