Editor’s Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post:
for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.
Here is Virna Elly’s Essay:
A wise patient once said, “My illness does not define me but it does help explain me.”
I, like so many others in the healthcare community, have a medical education. My education, however, does not earn me the designation of M.D. but rather, P.P. or, Professional Patient. When I was 8, I fell into a 3-day coma and awoke to learn that I had type 1 diabetes. In my 20s, as my peers began fledgling careers and obtained graduate degrees, I bravely fought to make sense of the dietary changes and medications that accompanied my newest diagnoses: hypertension and hypothyroidism. In my 30s I began my journey into end stage renal disease by way of ambulance. I was told that I had such severe anemia that I would need blood transfusions, followed by a dialysis regimen that eventually removed over sixty pounds of excess fluid trapped in my lungs, tissues and around my heart. It is my good fortune to live to tell this tale and a gift to be the recipient of a kidney-pancreas transplant.
My younger years were lonely, isolated and often scary as it seemed there was no one for me to relate to when dealing with chronic illness. The diabetics I knew were the ones profiled in Diabetes Forecast; those with hypertension or on dialysis were easily twice my age. Since I was typically the only “sick” one among my friends, I settled quite naturally into the role of patient advocate. I felt a responsibility then, as I do now, to ensure that I shared information and utilized every opportunity to change perceptions in a positive way.
I have lived long enough to witness dramatic changes in patients, medicine and technology. This evolution frequently presents us with opportunities to challenge the status quo and pave new paths. In recent years, for example, society has learned to Google, chat, tweet and blog its way to better information and virtual communities. As a result, the idea and definition of words like support and network are transforming not only patient profiles but healthcare itself.
I am not a unique patient. My story, while interesting, is not extraordinary. What sets me apart from others in my desire to participate in the Mayo Clinic Patient-Caregiver Social Media Summit is this: I have a lifelong passion for patient advocacy and a desire to elevate the use of social media to make lasting transformations in healthcare. I collect and share the stories and voices of the people that I’ve met through the years. They are my teachers and, as a student of their teaching, I am compelled to use their joys, sorrows, challenges and concerns in a way that allows people to make meaningful connections and feel a little less alone. It is for them and all who follow that I remain steadfast in my advocacy and focused in my pursuits. Whether in my role as the Patient Advisory Chair for the Mid-Atlantic Renal Coalition, as the consumer member of their Medical Review Board or, when serving as a technical expert on a panel, I do what these groups and many others count on me to do best…that is, to present the patients’ view and to act as a liaison for other healthcare groups.
I still use every opportunity to broker conversations and connections. Though people may represent different groups or have disparate interests, my objective is the same – to share information and ensure that the patients’ collective voice is heard and valued.
I believe that each of us has the capability to teach and to learn. To that end, I use my website, http://www.PatientsPerspective.org, and my twitter account, @nograpefruit, to accomplish both. I wholeheartedly invite you to engage with me. What we teach and learn from one another, we can pass on in the hope of helping others. In the spirit of social media I welcome you to help me improve health…one view at a time.