Accepting CFS/CFIDS/GWI/PTSD. Great Expectations.

 When I think of the term Great Expectations, I think about sailing around the world on a Schooner or flying around the world in The Electra. I think of Amelia Earhart and her indomitable spirit for aviation. I think of limitless and endless possibilities.

 The flipside of the term Great Expectations goes very much like the Novel Charles Dickens wrote in the mid 1800’s.  It is about a young boys’ quest for maturity. In his life’s journey, his main attempt is to become a well-mannered gentleman. At age 7 the boy encounters a unique situation whereas he tries to do a good deed, which he feels is “just”. The good deed involves helping a convict and turns out to be a major life-altering event. Orphaned and living with his abusive older sister and her husband, the boy grows up to learn his lessons the hard way. He learns very early in life that “the means does not always justify the ends”.  He learns about the enormity of knowing “guilt” first hand and carrying this broad burden.  After accepting inheritance money unknowingly from a disreputable source pertaining to his previous “good deed”, and becoming a well-mannered gentleman as he desired, he eventually is stripped away of all the inheritance and of all his possessions. The man learned that all of his Great Expectations did not turn out as he planned; yet in the end he graciously accepted what had befallen him. He walked away with a clear understanding of life, love and of becoming truly well mannered.

 I never expected to contract CFIDS. I never expected to be ill, I never expected to have viral overload and I never expected that if an illness should appear in me, that there would not be a viable treatment or cure. I have always had Great Expectations for this life. I have dreamed and created and lived life to the fullest. Now I find myself a caregiver to my son Blake, as well as a patient.  I find that my days are filled with Acceptance.

 CFS/GWI patients expect to have their cases heard, reviewed and treated. There are an estimated 17+ Million Cases of Chronic Fatigue Syndrome reported worldwide. There are around 36+ Million Cases of AIDS reported worldwide. I do not think as patients we should “expect” a cure for our illness. I think we should DEMAND the necessary research in order to obtain viable  treatment options.

 CFS/CFIDS/GWI/PTSD have  not been given the Biological Respect nor Biological Funding that they deserve. And what great studies have been done showing treatment options, are being ignored. This needs to Change as soon as Possible.

 According to the latest CFS/CFIDS research results, new information proves that inflammation of the brain is present and that the disability of patients afflicted with this illness is equal to that of a patient with Late Stage AIDS, Chemotherapy or Multiple Sclerosis. The Cost alone of  CFS on The United States Economy is estimated to be 25 Billion Dollars per year. Yet, The National Institute of Health ranks funding for  CFS Disease near the bottom of their list of 200 diseases.

  I expect that Political and Medical Reform for CFS/GWI/PTSD be on the horizon. Although several agencies have not handled this illness well in the past, I expect they shall do so in the future after progress is made with current studies. A positive factor in this Reform is the cropping up of websites around the world devoted to  Patients. It is both the creators and participants of these sites that are changing the landscape of our future as patients, as well as the Specialists devoted to research and study.

 The important lesson learned in Dickens novel Great Expectations which pertains to us as patients, is to learn from our past in order to move on successfully into our future.

Julia Rachel

Very Lucky Girl on Valcyte


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