In those first years of sickness, I really struggled to maintain an emotional balance. I was angry at the pain and debilitation, distraught over my losses of work and income, and fearful of the unknown future. I grieved for everything normal and ordinary. I worried about my marriage and the well-being of my husband and children. Not surprisingly, I slipped into dark periods of sadness and depression.
Hobbling down the painful path of living with CFIDS, a number of observations by others—odd phrases along the way—helped me adapt. Many of the ideas were inherently simple, while others held mysterious layers of complexity. I tenaciously clung to any tidbit of wisdom that gave me a handle on how to better cope with so many limits. I wanted to learn how to carve a meaningful life with sickness while retaining hope. I often quietly repeated words that sustained me. I used some comments to guide me and improve my perspective. Some words shook me up and caused a rapid change in behavior.
I’ve gathered a few of my “odd phrases along the way” to share. I’d also like to hear from other PWCs about the observations and comments that made a positive difference for them in handling sickness. Which phrases do you contemplate? Which words provide sustenance on the worst days? Perhaps we can assist each other in confronting the limits and losses imposed by CFIDS by compiling the phrases which made a significant impact.
“You know you’ve come a long way when ‘Why me?’ turns into ‘Why not me?’”
This is a pithy, useful and simplistic idea that is extraordinarily tough to execute. In that first horrible year of sickness, my husband, several doctors and dear friends paraphrased the concept. My befuddled brain also came across it in videos, television, radio, books and magazines. In the early months, I hated the idea of “Why not me?” It seemed defeatist, implying I shouldn’t be angry or sad. In a muddled maze of flu brain and disruptive pain, I just couldn’t say, “Gee, whiz. Sometimes people get so sick they can’t get out of bed and life as they know it stops. I guess it’s my turn. I’ll be a good Scout and be the best invalid around.” Let’s face it, I needed to cry and vent and somehow come to grips with the enormity of loss. At the same time, my rational self understood that there are things we can’t control. Not one of us is immune to the capriciousness of lightning, downsizing or viral invaders. While I resented my pervasive flu, I tried to make peace with it. I didn’t want to get stuck with the “Why me?” ruining my life and that of others. I didn’t want to beat my friends and family over the head with this unanswerable question.
“Why not me?” is a realistic and more comfortable place to be. It significantly changes the parameters of life with sickness. It frees me to move on with a reconstructed life, to live in the moment and let go of the past. I no longer get trapped in a vicious downward cycle of bemoaning my fate. Instead, I painstakingly move one foot in front of the other and get on with the business of making a life. I do what I can to contribute to family. I stake out a few modest, meaningful goals. I try to find points of joy and satisfaction every day, no matter how heavy the symptoms. It’s never easy, but it’s much better than sinking in self-pity and dwelling on what used to be.
“Mom is whining again.”
Ouch! I overheard these four words from one of my children in my initial year of illness. I was very sick, overwhelmed with pain and loss, and bedridden 95% of the time. I don’t recall the context, but the words and sentiment had a powerful impact. It was a slap-in-the-face, wake-up-and-smell-the-coffee turning point. I was an unlikely whiner by nature; complaining had not been characteristic of my healthy self. Heck, I didn’t like to hear myself moan and groan. But more importantly, I did not want my children to suffer the negative consequences of a whiny mother. It was hard enough for my kids to cope with a good mother whose skills and capabilities were altered by a debilitating illness.
I gathered my wits about me and took slow, conscious steps to eliminate whiny responses and tones—regardless of how awful I felt. I reminded myself that I was the adult and the parent. I wanted to persevere with devoted parenting despite drastic reductions in physical ability and daily expectations. I made a commitment to restore and improve my mature, balanced, grown-up self. I utilized professional counseling. I chose to be the best I could for my family. With lots of slipping and sliding, I opted to be strong and matter of fact in coping with pain and sickness.
“Don’t expect your husband to care for you in the same way you’d care for him if he were ill.”
Another blunt statement which contained great wisdom, this was said to me during my first visit with a psychiatrist in the eighth month of sickness. The doctor already had a solid handle on my medical history from the infectious disease specialist. In that first meeting, she probed a number of troubling topics. I was sad, scared, confused and angry. I was devastated by the loss of work, income and ability. I felt abandoned and alone. I wasn’t coping very well.
Oddly enough, one point of great distress was unfairly directed at Tom—my friend, partner and husband. The doctor was able to focus on this in a kind yet forceful way. I was aware, at least on one level, that my anger was unjustifiably aimed at an innocent, good, much loved person. Knowing that to be true, however, was only one small step in ridding myself of this demon. I did not want to inflict additional hardship on my husband or myself, but I was doing just that.
While Tom chopped huge amounts of wood to vent his frustration, I tried to slowly make peace with this strange, troubling angle of illness. We both took advantage of the couples counseling that the psychiatrist recommended, and those few sessions offered a bridge through the crisis. As I learned how to more effectively cope with sickness, my expectations gradually became more realistic. As confused and sad and sick as I was, I never lost sight of how precious my husband and children were to me. I wanted to strengthen those ties—in spite of the many losses and limits wrought by illness. The psychiatrist’s blunt assessment of my blurred, distorted, unrealistic expectations and her advice to honor differences assisted me in moving along.
“Husbands don’t deserve leftovers.”
You may substitute partners, children, best friends, parents, etc. The moral is the same. If we care about someone, we’ll try to give that person our very best—not the dregs. A lengthy illness merely underscores the necessity of carefully evaluating what matters. Unfortunately, many folks—healthy and ill—learn this lesson only after estrangements and failures. Trying to give the best of ourselves while coping with disabling sickness is a tall order. But what is the alternative? To give up? To walk away? To neglect? Not one of the alternatives appeals to me. I’ll somehow strive to give as much as I can despite the constraints.
“I’ve done a computer search. You’re probably the only couple dealing with chronic fatigue syndrome and still having sex.”
My long-time gynecologist greeted me with this observation and a big grin shortly after I’d passed the five-year mark with CFIDS. (Another health issue had prompted his scrutiny of the medical listings. He also recently had read my essay “Sick Sex.”) I chuckled and briefly reiterated my ongoing commitment to somehow preserve loving, delightful sexual intimacy in spite of illness. If anything, the limits and difficulties imposed by sickness made maintaining a satisfying sexual relationship even more of a treasure. Anytime I recall my gynecologist’s comment I smile and laugh. His seemingly silly words are valuable on that count alone. Laughter is crucial to successful living. His observation also reminds me that while illness robs in many areas, we can make some choices. Asserting independence of spirit is a powerful source of sustenance in the face of crippling symptoms.
There are other phrases that have had an impact on me and helped me cope in tangible ways, but I’d like to hear some of yours. Send your own “odd phrases along the way” to Susan Dion, c/o The CFIDS Chronicle. If you’d like a reply, please include a stamped, self-addressed envelope. Please indicate if your comments may be used in a future article.
Susan Dion lives in rural Salem County, N.J. She has been ill since March 1989.