Seventeen years ago on March 2, 2002, I suddenly became ill with what I thought was the flu. In a story that is probably familiar to most people reading this, I had no idea that my life had just dramatically changed, forever divided into “Before” and “After.” I went through all the usual stages: searching for a diagnosis, disbelief that I was still sick, anger and frustration that I couldn’t do the things I needed to do, and confusion that I felt OK on some days and debilitated on others. When a new primary care doctor diagnosed me correctly with ME/CFS (chronic fatigue syndrome) a year later, I was both relieved to have a name for my disease and also horrified that I was now “chronically ill.”
Although there’s no cure, over the past 17 years, I have gradually found, with the help of my doctors, various ME/CFS treatments and symptom management techniques that have each provided small benefits, adding up over time to enough improvement that I can live my life again. I am writing, taking care of my family, getting together with friends, and managing the enormous and convoluted mess that is my illness (and my son’s, too). I am not completely well and ME/CFS recovery is still a dream, but I am functioning fairly well compared to where I was, and I am living an active and happy life and doing things I enjoy, albeit with restrictions.
It’s not just my physical body that has changed, though. Living within the limits of chronic illness every day for almost two decades has changed me in other ways, too, though my essence is still the same. Some of these changes have been difficult or even heartbreaking, but most of them have been positive—things I never would have experienced if I had continued my hectic pre-illness life.
How Chronic Fatigue Syndrome Has Changed Me
I am more compassionate.
This is one of the most striking changes and something that I have seen in my two sons as well. Having been through such enormous challenges ourselves, compassion for others comes naturally. Struggling with a debilitating illness that is usually invisible to others made me realize that everyone I see every day is probably dealing with their own challenges that others don’t see. Illness has made me a kinder and more empathetic person. Similarly, I see my sons reach out to help others, and I am proud and grateful every time someone tells me that my sons are so kind (which happens a lot!).
I’ve become more patient and calm.
Like many people, I used to go full-throttle through my days. I plowed through each day’s to-do list as if I were running a race, and I put a lot of pressure on myself—and on my family—to do everything and not miss out. Chronic illness forced me to slow down and calm down, which has been good for all of us! Even if I have a lot to do, my body insists that I stop to take a nap after lunch every day, put work away by 7 p.m., and go to bed early. With limited time and energy, I simply can’t do it all. I find I’m not so prone to frustration or anger as I used to be, and I’m more patient with others (probably because I am more patient with myself). After dealing with so many crises and often having to change plans at the last minute, our family reacts more calmly when problems arise now. We’ve been through so much together that we know when something goes wrong that we will get through it, and it’s not the end of the world.
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I NEED solitude and embrace a quieter life.
I’ve always been very social, and I love to be around people and do things…but now those kinds of social interactions wear me out. I am able to tolerate and enjoy social activity with close friends or family once or twice a week, but I also find that I crave quiet time alone in between. Interestingly, this has helped my husband and I to bond more because he is a natural introvert. I used to get frustrated with his desire to stay home, always afraid we were missing out on something. Now, I embrace quiet downtime just as much as he does. We both look forward to our evenings together when we spend two hours watching our favorite TV shows and then an hour reading before we go to sleep. I not only accept this necessary quiet routine—I enjoy it.
I’ve become closer to my immediate family.
For several years, three of the four of us were severely ill, with only my husband left to take care of us. This experience, while horrible at the time, bonded us in a unique way. We spent a lot of time alone and housebound—just us, watching movies or TV, reading books, and playing quiet games. We always had dinner together, enjoyed quiet weekends camping, and took a 3-week trip with our camper every summer. Now, our sons are in their early 20’s and are busy with lives of their own, but they still enjoy coming home and spending time with us. The downside is that a rift formed with extended family, most of whom never tried to understand our illnesses, that is only slowly and incompletely healing.
I’ve become less of a perfectionist (still working on this one!).
I have always expected a lot from myself and others. Chronic fatigue syndrome forced me to lower my standards, which is a good thing! Friends are coming over and the house is cluttered? Oh, well, that’s why they’re friends! I can’t get to the store today? I’ll try again tomorrow, and we can find something here for dinner. Time and time again, I have had to settle for less than perfect, and it’s made me realize that’s OK. I’m not fully there yet; those perfectionist tendencies still drive me in many ways. But my illness places limits on me that cannot be breached, and that’s been good for me.
How I’m Still the Same
With all the changes that chronic illness and chronic fatigue syndrome have wrought, I recognize that I am still me. In fact, my illnesses have helped me to more fully explore certain parts of me. I’ve loved reading since I was a little kid, and now it’s an even bigger part of my life; I can embrace downtime as a chance to read. It’s always been important to me to help others and feel like I was making a difference, and now, as a writer living with chronic illness, I have that chance. Chronic illness has forced me to make changes in my life—many of them positive—but that essential core that makes me who I am has not changed. I am still me—a mother, wife, friend, and writer. And, I am enjoying my new normal as I continue my me/cfs recovery.
Suzan Jackson is a freelance writer who has had ME/CFS for 16 years and also has Lyme disease. Both of her sons also got ME/CFS 14 years ago, but one is now fully recovered after 10 years of mild illness and the other just graduated from college, with ME/CFS plus three tick-borne infections. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com You can follow her on Twitter at @livewithmecfs.