- Last Updated: 06 April 2023 06 April 2023
"I no longer harbor the suspicion that having the illness is my fault."
When I was finally, at age 52, confronted with a diagnosis of ME/CFS, the first years of living with that diagnosis were like driving in the dark in the rain. I didn’t know if I was going uphill or down, if I was approaching a stop sign or merging onto a freeway. Everything I tried to understand about this condition was obscured by a dark, rain-slicked windshield.
I didn’t even know what to properly call my condition: Chronic fatigue syndrome? Myalgic encephalomyelitis? Both? Nor did I understand which of the symptoms I was experiencing were included in the diagnosis. I didn’t know that difficulty sleeping was a part of it. I didn’t know about post-exertional malaise. I didn’t know if what I had was an autoimmune disorder or not. Needless to say, I had no idea how to go about getting well.
I only knew that I was exhausted, so much more so than my friends and colleagues. I knew that the harder I tried to get well the worse I got. Not knowing any better, I harbored a suspicion that whatever was happening to me was my fault.
I was, however, exceedingly lucky to be diagnosed by a family practice M.D. who, shortly after I began to see her, established a private practice to exclusively treat patients with chronic conditions like untreated Lyme’s disease, fibromyalgia, and ME/CFS. She never doubted the things I told her about my body, never questioned my limitations, and scheduled tests for me that other providers wouldn’t have known to order. She was straight with me: There is no cure. But she reassured me that I could live with this syndrome, I could manage it, and I could even improve. In that rainy darkness, she was the lights on my dashboard.
Of course, I didn’t necessarily listen to my doctor. She told me I needed to stop working, and I refused. I carried on for four years after my initial diagnosis, experimenting with leaves of absence and reduced hours, and even taking a new position that I thought would be less taxing.
I profoundly loved my work as a college writing instructor. I ran writing centers and taught first-year composition. I delighted in having colleagues (even the ones I loved to kvetch about), I appreciated my mentors, and I adored the students whom I had the privilege to teach. I came late to this career in higher ed, so I had every intention of making up for lost time by teaching until I was seventy.
The dashing of those plans was more devastating than I can say. Even more devastating was my inability to be the mother my children needed as they navigated the end of their teenage years and the beginning of their young adulthoods. I was so often missing in action when they came home late at night or had friends over or wanted me to come to events in which they were involved. I felt I was failing in every way possible. I lost my career, my ability to parent, my social life, my ability to exercise, the sense that others considered me competent, even the ability to own and care for a new dog after our beloved golden retriever passed away—the grief was overwhelming. I brooded in the darkness of my bedroom and listened to sad songs about raindrops sliding down windows.
It didn’t help that I come from fiercely independent German descendants and live in Minnesota, a state of loners. Doing for oneself is of enormous value here. But after three years of misery, which coincided roughly with the pandemic, I began to realize that not communicating with another soul who is living with ME/CFS was a really, really bad idea.
After a frustrating internet search, I finally landed on the website of the Massachusetts ME/CFS & FM Association. I had an encouraging phone call with Ken Casanova, to whom I will forever be grateful, and a few weeks later found myself in a Zoom support group.
I hesitate to say that my first reaction to spending an hour and fifteen minutes with people who have been sick with ME/CFS for anywhere from one year to forty was not positive. I got off the call and wept. I was so afraid that twenty years from now I would be one of the members telling newcomers that I’d suffered this condition for decades. I had no intention of attending another session.
But I did attend. Because, like it or not, I need people who understand what living with ME/CFS is. And the Massachusetts association is so far the only place in my life where I can have that. I’m now a regular at the Friday afternoon support group.
I’ve been acquainted with this group for only seven months, but already it has changed the way I see my condition, and the way I live with it. I’m not driving in the dark in the rain anymore. I have a vocabulary for things I formerly couldn’t describe. I’m kinder to myself and sometimes even treat my needs as important! I accept my limitations and am much less likely to blow through them. As a result, I’m crashing less often and less dramatically.
I’m also able to talk about my illness more straightforwardly with people who know nothing about it. I’m less tongue-tied, partly because I’ve paid attention to the way people in the support group and the Sunday Conversations talk about the illness, and partly because, thanks to this group, I no longer harbor the suspicion that having the illness is my fault. Having heard the amazing variety of ways in which people lived before they got the illness and the equal variety in how they got sick, I truly get that having ME/CFS is a random stroke of bad luck. I’m not guilty of anything. Thus, instead of avoiding saying a word about my condition to anyone, which is what I did for years, I’m beginning to speak up for myself. I’m explaining—one family member or friend at a time—what ME/CFS is, what medical science currently knows about it, and all the many things we still don’t know.
As I said, I’m pretty new to the Massachusetts group, and relatively new to ME/CFS. I still have a lot to learn, and I have no idea what the road ahead of me will be. But at least now I can see it.
Julie Bach lives in St. Paul, Minnesota, with her husband and college-aged daughter, and her son nearby. A few of her thoughts on living with ME/CFS can be found at the blog Undone-CFS (undone-cfs.com).
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