Howdy! I am the founder and author of PIPUNITED. I’m also an accidental blogger, patient advocate and reluctant political enthusiast for patients, and families.
My purpose is to expose the truth, offer support, and develop a community of unity to any one of the millions that live with, or are affected by, invisible Illnesses.
The topics are crafted to help patients become informed with factual information that impact their personal lives. My readers can make educated decisions regarding their health care, through verified evidence. Currently, navigating the political, social, and cultural climate of patients is difficult as propaganda surfaces often. Although, proactive awareness is not impossible, when patients have valuable information that relates to illness management.As this blog continues to develop, my writing will be reflective of our current personal, physical, social and cultural concerns as related to patients.
The “problem” with invisible Illnesses, is well, it’s not always obvious. Depending on the day of the week, you probably would have no idea what physical, emotional, or mental battle I am fighting. One does not “see” physically, as one would if I were an amputee, or balding from chemotherapy treatment. I have what are coined, Invisible Illnesses. Sometimes, I look perfectly normal. I must ask, “What does normal look like”?
Most invisible illnesses are considered autoimmune diseases. Basically, the immune system goes haywire, and attacks itself. I live constantly with these “invisible illnesses” and feel that these conditions that run amok in our bodies deserve an educated and personal perspective from the patient’s point of view. I also have a genetic, rare, and incurable disease called Common Variable Immune Deficiency (CVID). CVID Is A specific type of a Primary Immune Deficiency (PI)……. don’t want to lose you. Remember the “Boy Who Lived in a Bubble” or the film starring John Travolta, Bubble Boy? That’s it. Now you have an idea of what I’m talking about.
As a college professor of a science curriculum verifying sources of information was crucial when separating fact from fiction. Objectivity and validity were the only acceptable sources of evidence when reporting. Likewise, I continue to use these skills as I develop my research for my content. This method enables readers to understand, and refer to the legitimacy and accuracy of any given topic. It’s also helpful to have solid evidence to enable the truth, when confronted by omissions or deception, pertaining to any given topic.
It is very strange, when you must learn a whole new way of existing. The experiences encountered, lessons learned, and reflecting upon it all, has made me stronger, in many ways. Who I was pre-diagnosis, compared to who I am now, are the same. Only stronger, wiser, and my passion for humanity, equality, and our right for survival surpasses all. Ultimately, my pre-and post CVID diagnosis traits have intertwined, goals and focus have taken a new direction, fact from fiction are defined, empowering patients to advocate for themselves to improve their quality of life through patient unity. To many are growing wealthy from our suffering. This public downplaying, complete omission, or denying or minimizing facts to the patient populations they purport to advocate is happening. This will continue to occur, when Patients don’t have access to the truth. Truth and knowledge empowers.