When navigating the devastation of a degenerative illness you become familiar with phrases your loved ones, or even complete strangers may send your way. For me the terms I most received were idioms such as “Dream, believe, achieve,” “Always stay positive” and “The best is yet to come.” While these expressions come with good intent, I found none of them helpful in my situation; I could not simply believe my illness away. No matter how hard I dreamed of a functioning body, no matter how positive I stayed, my test results always presented further progression of my disease. The company around me encouraged me to stay positive and have confidence that I would receive good news from my next round of testing, so each time I was presented with poor results I was devastated. Each deficient medical result was another blow that took weeks to recover from. With this forced sunny disposition on an illness that is anything but, life seemed so bleak; constantly receiving information about the deterioration of my health when I was hoping for the exact opposite, took a serious toll on my mental stability over time. I could no longer live like that — It was time for a change.
I had, had enough of this “Dream, believe, achieve,” perspective, it was unrealistic, and frankly counterproductive to an illness that a skilled physician had already expressed would take my life. Why would I stay positive for suitable test results when I knew they were not going to come? Why would I put myself through the torture of constant let downs? Why would I submit myself to the torment of persistent disappointment? Instead, I decided from that moment on I would prepare myself for the reality of my illness and acknowledge the desolation it would wreak in my life. I told myself then and there that I was no longer going to hide from my reality but embrace the life style that had been thrust upon me. No longer would I cower in fear of unpleasant results or the progression of my fatal illness. I would meet these results, and new challenges head on!
While may people around me depicted this mindset as “pessimistic,” I utterly disagreed. I believed wholeheartedly that my view was one of acceptance, realism and endurance — what I liked to call a “realistic, optimistic perspective.” With this new outlook in place each of those negative test results, or new symptoms that developed did not knock me back for quite as long. I felt composed, calm and prepared; I knew these results were coming and I was not surprised. I still felt the tinge of disappointment, but no longer the devastation and horrendous sadness that used to accompany my results. While yes, some days tears still flowed down my cheeks, my recovery was easier. With the full acceptance of my illness I was able to find more joy in my life and celebrate the small victories that manifested themselves; no longer in a constant state of mourning over my deteriorating health, happiness become easier to find.
I am in no way stating patients should halt their belief in miracles or that they should abandon their hope. I myself believe strongly in the power of miracles, however, I will not put my life on hold for something that may not manifest itself in my lifetime. I would much rather be prepared for the wreckage, than live in fear of it.
Chanel White is a young woman battling Systemic Scleroderma, among many other conditions. She has dedicated her life to raising awareness to those suffering chronic illness. To follow her health journey you can visit her blog: A Day In The Life Of A Tube Fed Wife.
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