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Submitted to the Chronic Fatigue Syndrome Advisory Committee by:
Brian Smith
May 6, 2008
Good Morning. My name is Brian Smith, and although I may appear like a healthy young man to you, please be assured, I am not. Chronic Fatigue Syndrome has stolen the last 13 years of my life, and continues, on a daily basis, to deprive me from any semblance of a “normal” life.
Before I became ill with a severe case of mono during freshman soccer tryouts, I was a four-sport athlete, a 4.0 student, and a typical, All-American 15 year-old boy. During a time in my life that is developmentally vital, I spent over half of high school sick, in bed, with CFS. Not only did I miss out on the academic aspects of high school, but the important socialization that occurs with adolescence as well. I could not participate with my friends playing sports. I was too sick to attend Homecoming. I did not enjoy the luxury of having a high school sweetheart. This was not due to the inability to interact socially, nor the lack of desire to; this was due to the physical constraints that CFS placed upon me.
During my late teens, and early twenties, it took nearly six years to achieve my Bachelor of Science degree. Not because I was the cliché undergrad, floundering along, afraid to enter the “real world” -- but because I was forced to withdrawal from classes, and take lighter course loads -- all because of the debilitating symptoms of CFS. Again, during a developmentally important time in my life, I did not have the liberty of participating in all the activities that young, college students typically do. It was physically impossible for me to go on dates, to attend sporting events, or to go to college parties with my friends. Because of CFS, I was a prisoner in my own body.
Following college, I began working full-time at a large investment company. In less than one year, I had suffered a full relapse of CFS, and was forced to resign due to my disability. I loved my work, and would give anything to return to it. However, CFS has continued to ravage my mind and body, making this prospect an impossibility. I have aspirations of one day attending medical school; on the surface, I may appear as a sound candidate. I have satisfied all the major prerequisites, my GPA is solid, I have notable recommendations, et cetera. However, I must be a realist. The rigors of medical school would most certainly wreak havoc on my already CFS-weakened body, causing this dream to remain just that -- a dream.
As a young American man, it is disheartening to not be able to participate in all the things that embody the “American Dream”. I watch from the sidelines as my friends and peers embark on their careers, get married, purchase their first homes, begin families, et cetera. While my peers are afforded this luxury, I am relegated to living in my parents’ basement. While most in my demographic are self sufficient, I am not, and likely will never be. Make no mistake -- this is not by choice. I want to work. I want to be successful. I want to one day have a family. I want to be a contributing member of society. I want all the things that CFS has deprived me of, and has caused me to be a spectator to. But given the current state of my health, as well as the inadequate response by the federal government, these things remain unattainable, and will likely remain that way -- unless this committee, the DHHS, the NIH, as well as the CDC increase their efforts, and treat CFS as the real and disabling disease that it is.
At the age of 24, I was diagnosed as being hypogonadal, secondary to CFS -- likely the result of extended and frequent viral infection, according to my endocrinologist, as well as my immunologist. As a young twenty-something, I had to make the decision of beginning testosterone replacement therapy, which I am sure you realize, is a life long commitment. Many of you are also aware of the implications this decision can have on my ability to father children in the future, in addition to the long term consequences to my health. I do not need to explain the mechanism of how testosterone replacement often times terminates the male body’s ability to perform spermatogenisis. However, I do need to explain how difficult and unnecessary a decision of that magnitude is for a young man, at the age of 24. I do need to explain how difficult and unfair the decision to cryo-preserve semen is for a young man, at the age of 24. Please try to put yourself in my shoes. It is not easy to initiate a conversation with a potential girlfriend, explaining that due to CFS, I may never be able to father children. And even if a woman is able to overlook all of the other significant concerns that accompany CFS, breaching the topic of parenthood through in-vitro fertilization is colossal. I have had to make these choices. I have had to initiate these conversations. This is my reality. This is CFS.
Over the past 13 years, I have dealt with the myriad of symptoms that compose CFS. Beginning as a 15 year-old, I have been forced to navigate through high school; then college, with its layers of bureaucracy; the tangled mess of the American insurance complex; differing physician opinions; treatment options, et cetera -- all while being significantly disabled by CFS. I have a tackle box filled with medication. Just traveling here was a struggle, filled with airport pat-downs and searches, because of the medication that allows me to possess some inkling of normalcy, in a life otherwise plagued with CFS, and all of the symptoms it entails. I have a 3 inch thick binder filled with the past 13 years of my medical history. And please, lest you jump to the conclusion that depression is the cause of all of my woes, know this: I am not depressed. I have been evaluated for depression on a number of occasions. I am frustrated -- frustrated with my health, frustrated with the lack of treatment options, and frustrated with the government’s inferior response to such a devastating illness.
This is my life. This is what CFS looks like.
Submitted to the Chronic Fatigue Syndrome Advisory Committee by:
Brian Smith
May 6, 2008 |
