Understanding CFIDS/GWI/PTSD. Miss Understood.

Miss Understood here checking in.

As CFIDS/GWI/PTSD Patients we have been misunderstood greatly by 92% of the populous (my estimation only!).

How can that be? In what way have we conducted ourselves whereas we have gotten to this point, space and time in our lives?

 Did we wear beauty pageant sashes that read “Miss Understood”?  Did we dress up as a pig, lipstick up, string on awesome pearls and don heart shaped glasses?

 CFIDS, GWI and PTSD patients are largely misunderstood because our disease is “of unknown etiology”.  The unknown provokes fear, drama and a feeling of helplessness to both patients as well as patient providers. We are like aliens in a way. However, in Earth language, I am here to tell you that we are friendly aliens. I repeat, friendly! We just want to be diagnosed, informed, guided, understood and healthy.

 I have a dream. By the time I am 50 years old; I want to be cured. I am grateful to the team of doctors who have helped me along my 30+-year journey with this illness; however I am ready for “the cure”. I have another dream. It is more important than my own dream. I dream that my 21-year-old son Blake will live a full, active and healthy life. I dream that he survives this disease.

 I’ve held many “titles” in my life: Miss Diagnosed, Miss Informed, Miss Guided and Miss Understood. As a biology major, these titles do not make sense to me. I prefer the “alien” title the best.

 There is a biblical saying…it goes something like this…”Where there is hatred, let me sow love, where there is darkness, light, where there is sadness, joy. Grant that I may not so much seek to be consoled as to console, not so much to be understood as to understand, not so much to be loved, as to love.”

 Our quest as patients is to understand, not to be understood. This is becoming clearer to me as the days pass. If we cannot be understood by 92% of the population, then we need to learn to understand. Please do not underestimate my capacity to move forward as an advocate with this mindset. I am more committed, more determined and more forceful in understanding this illness than I’ve ever been.

 I used to think I was special, unique and out of the box. I had always been told I was “different”. My thinking, thought and behavior patterns were noted since birth as “having broke the mold”. I have been both rewarded and chastised for my behavior and thought patterns. I now realize that having this illness since the age of 15 has somehow exponentially magnified and altered some of my natural thought and behavioral patterns. Some of these magnifications/alterations have been humiliating, degrading and haunting to deal with. Hence, enters the word understanding.

 If we can understand what this illness is doing to our minds and bodies; then we might just have the strength to understand what others see in and of us. Its’ no wonder this illness was labeled as a psychiatric disease from the beginning. Lets’ understand this together. We are not mentally ill. We are not victims. Yet we are changed.

 We have a serious choice to make with our illness. We can try and make others understand; or we can become as informed, guided and proactive as possible in healing and seeking a cure. Of course, we could walk around in a pig’s head, with pearls and lipstick and heart shaped glasses on instead.

Julia Hugo Rachel

Very Lucky Girl on Valcyte


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