We are at odds with an indomitable foe of the worst kind. One that challenges us with callous indifference and leaves us struggling while the rest of the world looks on unknowingly. It makes us question our toughness
and our resolve. It forces us to make difficult decisions in which, oftentimes, none of the choices seem favorable. It causes us to grow resentful when we think of what we’ve lost and what could have been.

What makes this fight often so difficult is the elusiveness of the foe. It will attack any vulnerability we have with staggering strength. No matter how well we are feeling, at any moment, it will bring us to our knees and make us doubt our ability to cope. We find ourselves bargaining to make it stop. If we can just get through this, we will do everything we’re supposed to and never take anything for granted ever again. We take it personally when the illness doesn’t listen. When we feel better, we feel trapped by the overwhelming pressure to make up for lost time and regain a sense of normalcy. At all times, the fear and dread of a worsening condition hangs over our heads. We feel a sense of defeat, failure and a loss of control.
Recently, I’ve been doing a lot of thinking about my identity, both as an individual and as an individual with an illness. Certainly many things have changed since I began to feel ill, and at this point, those two identities are indivisible. I have come to accept I am who I am because of my illness, and it will probably continue to play a big part in my life.
Despite this acceptance, I have struggled with how I should define myself in relation to being sick. The concessions I make and special care that I must take, seem to be at odds with what I feel like I should be doing with my life. In a sense, my illness sometimes seems to keep me from being me. At times, I have felt lost behind being sick and sometimes I wonder how much of what I’m doing is self-motivated and how much is imposed by my illness. However, in accepting being sick as a part of my identity, I’ve come to realize that my actions, whether influenced by my illness or not, are uniquely my own. Though I’ve struggled, I have tried to make sure none of the limits placed on me are self-imposed. Concessions are healthy, necessary and important, but excuses and presumptions are not. Sometimes I am frustrated by how little I can do, but other times I am surprised by how much I can accomplish. After all, Franklin Roosevelt had polio. John F. Kennedy had Crohn’s disease, Addison’s disease, and a very bad back. Michelle Akers has chronic fatigue syndrome. Vincent Van Gogh had epilepsy. Lewis Carroll had migraines. Perhaps I will never reach the status of any of these people, but I will never know if I quit before I start. With this new outlook, I have begun to feel the sense of loss diminished and a new identity emerge that is less at odds with itself.
This is my Spoonie call to arms to take back control and not let our illnesses define us. While illness can challenge us physically, so long as we retain the power to choose, we have the ability to take control. We have more weapons at our disposal than we are aware of. In the face of what seems to be insurmountable adversity, let us choose persistence and resiliency. Let us choose life and happiness. Let us choose to love ourselves, both for our limitations and for our strength. When we choose bitterness, the imposition of illness is doubled, but when we choose generosity and optimism, we fight back with an impregnable spirit. This is not to say that these choices will do anything to lessen the physical severity of the illness. We will continue to have good days and bad days. Some days we will wake up uncertain if anything productive will happen, but illness cannot take away the basic heroism of everyday life in that we do the best we can with what we have to work with. Doing our best with our lot is where illness cannot limit us, because it is no more difficult for us to do than for anyone else, in any other situation. Even when we are struggling, the things we do to make ourselves feel better represent us fighting back instead of us merely being imposed on. Regardless
of how badly we feel, the naps we take and the medications we comply with, the good food choices we make and the steps we take to care of ourselves are empowering because we are taking control. Let us begin to try to remove emotion from how we relate to our illnesses. In our lives, our illnesses are neither good nor bad, they just are. They make us who we are for better and for worse. They challenge us and they uncover in us a great strength and spirit. They may change how we do things, but they can’t change who we are. We won’t let them.
Lisa Friedman © 2007 , butyoudontlooksick.com