Posted on July 26th, 2012 by Admin
Editor's Note: Brenda T. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
From an early age, I became a frequent patient and it was after reading a book brought to me as a gift while I was hospitalized that I decided on my career choice, nursing. To this day I am a caregiver and a patient, this time a patient suffering from multiple sclerosis (MS). In my heart, if not on my paycheck, I will always be a nurse.
I was unaware of my MS diagnosis when I went back to school to obtain a paralegal degree; I was simply rejoining the workforce when the oldest of my children started college. While raising my three children, I also became a private caregiver to my youngest child. He was hospitalized many times for a myriad of perplexing symptoms and illnesses. It was at this time; in the very early 1990s that I learned that there wasn’t an easy way to access the collective thoughts of the medical field, short of subscriptions to print medical journals. I spent up to 8 hours a day researching and reading in large academic libraries on what might be ailing my child. I would read abstracts from PubMED and published articles when I could access them. What I would have given to have had access to today’s version of the internet.
Fast forward to the year 2005 when I began work as a Nurse Paralegal. My job description was to read medical records, research any unknown illnesses and then explain in laymen terms, the disease process to the assigning attorney. In some cases, it was my duty to write portions of Federal Statements of Fact for legal briefs or illustrate a medical concept for a jury’s understanding. I still was a caregiver, but to an audience not to an individual. My research in this job introduced me to blogs, forums, and personal webpages.
In 2009 I was officially diagnosed with MS. With my many hours spent behind the computer researching and writing for others, I started researching for myself when the first mention of MS came up. I was very fortunate to have found the MS forum on MedHelp.org. Here was a wide array of people in different stages of diagnosis. From the ones who were told “maybe it’s MS” to those who had suffered many years with this disease. I like it here and it became my new “MS home”. Not that I didn’t continue to research but these people understood what I was experiencing.
A little less than a year later, I was honored when one of the founding members of the MS forum, a retired physician, invited me to join as a Co-Community Leader after she jumped through hoops and hurdles to add a fourth CO-CL since our forum already had the normal quota of co-leaders. I was so excited! Turns out, this can be one tough job and demanding at times. I for one, will research until I have found an answer, whether it be on a medical site, a news site, a Facebook page, a link from a personal blog or on another MS site. I still have that nurse’s training that taught me patient teaching and I can’t do patient teaching without the facts. I have a need to turn over every stone looking for an answer to questions asked by others. This was true while I was a Nurse Paralegal and it is true to this day.
The Social Media Summit would further my knowledge of social media and its advantages of reaching a larger crowd. My background in nursing and the paralegal field would provide the Summit a different point of view, mostly likely not encountered before. With the additional knowledge I obtain, I can “pay it forward” to the MS community and to the fledging National Multiple Sclerosis Society chapter in my area. I have many people approach me, usually because of my cane or other assistive device, and ask what is wrong. When I respond, they always say they know someone with MS and with my new skills and knowledge in social media I hope to be able to make a connection that serves the intended recipient well.
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