Editor’s note: I first “met” Jill in Carol Sveilich’s amazing book of profiles titled “Just Fine – unmasking concealed chronic illness and pain.” I am indebted to Carol, and Jill, for sharing these stories, and lending their insights and support.
Jill VanMeter: Licensed Acupuncturist, CFIDS Patient
“The advantage of having an illness that is not easy to see is that people do not look at you differently. The disadvantage is that they do not look at you differently. They expect you to be able to do what they are doing. It is a double-edged sword.” — Jill VanMeter
Jill VanMeter lives with Chronic Fatigue and Immune Dysfunction Syndrome (also known as CFIDS or CFS), and struggles with other people’s perceptions of her and the status of her health. Because she looks “well,” she is often not afforded the consideration given to visibly ill people; her symptoms are invisible to others, while they are debilitating to her and take her life off track. That is the hard reality of living with a chronic illness.
While Jill likes to keep her illness somewhat private so she can work and socialize without being questioned, it annoys her when she tries to share the experience of her illness with others, and they simply do not understand. “It is frustrating if I say to someone, ‘I am so tired,’ and they say back, ‘Yeah, I’m really tired, too.’ There is just no way to explain the depth of my fatigue.”
Ill with CFIDS for over six years now, Jill has learned to live with the cycle of feeling good and then crashing. “This illness is like waves in the ocean…I start to feel better, get excited, feel that I should take advantage of feeling better and get things done, do too much, crash, get scared and panic that I’ll never get better, let everything go and rest, start getting better, and the cycle begins all over again.”
Jill has recently learned not to overdo it when she is feeling better than usual; instead, she tries to wisely manage her energy output to avoid debilitating crashes. She has asked close friends and family to let her know when they observe her in a “higher functioning” phase and she is doing too much. This feedback helps Jill in the absence of a support group.
Overstimulating situations wear Jill out, so she has learned to make choices accordingly. This includes avoiding certain people whom she knows will drain her; and avoiding crowded gathering places, such as malls, is essential. She finds it is very difficult to turn down social invitations, but no longer feels guilty saying, “no, thank you.” It is painful to see people exercising and enjoying themselves when she can’t; she finds it extremely frightening to feel so ill and yet look fine to the rest of the world. “Just having a normal social life, where I can go out for dinner after work, seems so far away from my current reality. I don’t have difficulty hearing about other people’s successes, but at times I can get into a pity place and feel sorry for myself.”
Among the many lessons Jill has learned, “surrendering” to CFIDS instead of fighting it is crucial to her well being. “I plan my days carefully now. I don’t return every phone call. I take naps….I hate to say no to anybody or anything. I have had to learn all over again how to take care of myself, such as going to bed when tired and not running around all the time…I realize now that I have only a certain amount of energy and I have to be very picky about where I spend it. Like the waves in the ocean, I must continue to surrender to my illness again and again. Only when I surrender do I find peace. This realization is very important.”
Jill has succeeded in transforming pangs of self-pity into a kind of appreciation of what CFIDS has brought her, and says she is grateful for the lessons and opportunities she has gained from having the illness. Despite the considerable challenges its invisibility presents, because it has enabled her to “fake” her way through her work life, Jill is glad that her illness doesn’t show.
But because she has always been concerned with making people around her comfortable – which often requires wearing a bogus “happy mask,” Jill must now work hard to not worry so much about taking care of other people’s feelings, which leads her to emotional and physical exhaustion. In her journey to heal, Jill practices gentle yoga, journaling, careful scheduling of her days, and accepts her limitations. She has found intravenous hydrogen peroxide (administered by a medical doctor) to be very helpful in boosting her energy levels. Eliminating gluten from her diet has also been beneficial.
“I practice daily gratitude. I thank this crazy illness that has grabbed my attention and changed my life and awareness in so many ways. This is not always easy, especially when I’m in a flare-up. Somewhere in side I am aware that there is meaning in this illness, as long as I am willing to uncover it.”
For more information about “Just Fine – unmasking chronic illness and pain” by Carol Sveilich, MA, please visit http://www.immunesupport.com/shop/Books.cfm. Carol Sveilich’s website is found at http://www.writefaceforward.com/.