Susan Milstrey Wells uses her own experience with chronic illness to offer a compassionate guide to living with a chronic disease in A Delicate Balance: Living Successfully with Chronic Illness. Wells, who suffers from Sjogren’s Syndrome, fibromyalgia, and interstitial cystitis, is a professional writer whose illness has forced her to re-evaluate how she lives her life.
Her book takes the reader through a series of steps in the journey people inevitably go through when diagnosed with a chronic ailment. It describes the search for a diagnosis, getting through the “it’s-all-in-your-head” period, finding a physician and treatment, self-help, and coping mechanisms. It concludes with a chapter entitled, “The Gift of Chronic Illness,” in which she looks at illness as a way to grow emotionally and spiritually.
Wells, who lives near Albany, New York, uses not only her own experiences, but those of many others who shared details of their lives with her. In a recent interview, she discussed some of the ways in which her illness has affected her life.
“Professionally, my illness is one of the bigger areas that has affected me,” she says. She no longer gets dressed, goes into an office or commutes and instead works out of her home. “I still work 40 hours,” she says, “but there’s no more pretending to pass as healthy.” She explains that the energy she formerly used to “put on a happy face” at work she now funnels into actual work time.
But becoming ill in a sense forced her do something professionally she’d always wanted to do. “I’m not sure I would have had the courage to work for myself if I hadn’t become ill,” Wells says.
Her marriage is also affected by her illness, though not always for the worse. “My spouse is especially supportive,” she says. “It’s a new marriage and he knew I was sick. I do think he gets a little disappointed sometimes when I can’t do things he’d like us to.” The flip side, however, is that when she does feel good, it can inject spontaneity into their relationship. “If I’m feeling healthy and say ‘let’s go somewhere,’ it’s wonderful. He’s learned to be quite flexible.”
She has also learned to take one day at a time, a difficult task that she works on continually because, in her own words, she’s “a big control person.” How does she do it? “If you’re struggling to get through the day because you’re tired, you don’t really have the energy to think about tomorrow because you have to spend what little energy you have on today.”
Accepting is a big part of living with chronic illness, she says, and she discusses it in depth in the chapter “From Denial to Acceptance and Back Again.” Steps to be taken on the road to acceptance include confronting the loss of health and former identities, and the end of spontaneity. Getting over feelings of shame and facing cultural prejudices toward diseases. She discusses the need for support, whether in cyberspace or local group meetings, and mentions the value of therapy.
The insensivity of those without chronic illnesses can be difficult, and Wells’ response to those who say “But you look so good” is a simple ‘thank you.’ “It comes to what you want to spend your energy on,” she says. “I no longer try to defend myself to those who aren’t in my close circle of friends.”
Living in the moment is one of the more difficult aspects of her ailment, but one she thinks is a good lesson she’s been forced to learn. “I try to find balance,” she concludes.
(A Delicate Balance is available for purchase at the immunesupport.com store product code bk82.)