Humans of ME/CFS
I have been the face of ME/CFS for over 45 years. After graduating from nursing school in the mid-1960s, I moved to Hawaii. During visits to my family in Indiana, I came down with the flu and meningitis. That is when it all started. By the time I married in 1970 and set up a permanent home in Hawaii, this “monkey-on-my-back” was well established.
In the early years, the relapses were only two to three times a year, lasting from two to four weeks and usually brought on by extreme exertion, such as giving birth to my two children. The overwhelming fatigue and malaise would abate, and life resumed in a normal way. But over the years, the symptoms came more frequently, lasted longer and could be triggered by even minimal exertion. During exacerbations, I have always felt exactly the same since day one. The only variable to the fatigue and malaise is the severity: sometimes mild, sometimes severe and everything in between.
The story of my search for the cause of this illness is like everyone else’s—dozens of doctors, hundreds of appointments. The same old refrains: “Well, it’s not killing you,” or, “If it’s serious, something else will show up,” or the most repeated, “Are you depressed?” I waited patiently over the years, still am. I keep abreast of the research and information that is known so far. And as I enter into my seventh decade of life, I contemplate if the cause and cure will ever be known in my lifetime.
How has ME/CSF affected my life? It resulted in abandoning my professional goals of career advancement, obtaining a degree and working full time. I was forced to retire at age 62. My marriage ended after 40 years, and although my illness was not the cause, I’ll never know how much it played into the disintegration of the relationship.
It has severely limited my social life. It causes the disappointment and embarrassment of yet another cancellation. Do I make the commitment, the plans, the reservations, knowing full well that there is a very good chance that I will have to cancel and disappoint not only myself, but the people to whom I’ve made the commitment? If I’m lucky, I will be able to participate and enjoy and will probably exert myself. But do the memories of those good times outweigh the consequences that may put me in bed for the following days, weeks, months? It’s always a gamble.
As I reflect on my years living with ME/CFS and all of the losses attached to it, I also have positive memories of my accomplishments in spite of my illness. After all, it has allowed me months of wellness and vitality and spirit between crashes, and I have used this time to make a difference—for nurses, patients, family and friends. That’s a much better legacy than, “She was sick all of the time.”