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 Crystal Saltrelli’s Essay:
The first time I heard the word “gastroparesis” was the day I was diagnosed with the condition in 2004 at age 23. After I left the doctor’s office, I began searching for information to help me learn more about gastroparesis and figure out how to manage it. I went to the library and the book stores, but I couldn’t come up with a single book written about the topic. I turned to the Internet, but all I found were personal stories that painted a depressing, hopeless picture of the future. I felt overwhelmed, frustrated and alone.
I soon realized that if I was going to get well, or at least get better, my only option was to take responsibility for my own well-being, proactively explore all of my options, and become my own advocate. The next few years consisted of a great deal of trial and error and consequent ups and downs. At times I felt defeated and at other times I felt hopeful. But I always felt alone.
In 2009, having exhausted all other options, I decided to have a gastric neurostimulator implanted at the Mayo Clinic in Rochester, MN. This decision changed my life. Less than a month after the surgery, already feeling physically and mentally strengthened, I was able to start classes at the Institute for Integrative Nutrition (IIN). It was difficult to juggle the intensive schooling and the gastroparesis, but thanks to the combination of the gastric neurostimulator and what I was learning at IIN, my quality of life continued to improve.
Though I started the program at IIN to help myself, it didn’t take me long to decide that I had to use the information to help others, as well. By the time I graduated as a Certified Health Counselor, I was counseling a handful of other people with gastroparesis. I was finally living well with gastroparesis and I desperately wanted to educate, empower and inspire others to do the same. Above all, remembering how alone I felt early on in my journey, I wanted others to know that they were not alone.
With that in mind, I began blogging about my experience, though I wasn’t sure that anyone else would ever read what I was writing. Less than two years later, my blog has had nearly 27,000 visitors from all over the world. My counseling practice has also grown and now includes both individual and group programs for people with gastroparesis. In 2010, I began using Facebook and Twitter to better connect with other GPers (as I call them). This year I jumped into YouTube, making videos to better educate and inspire people.
Though I wouldn’t say that I’m grateful to have gastroparesis, I am grateful to have the opportunity to help others navigate this difficult condition and live as happily and healthfully as possible. I’ve received so many messages from people who say that my blog and Facebook page have uplifted their spirits, allowed them to take better care of themselves, helped them to better understand the condition, empowered them to become their own health advocates, and shown them that they are not alone.
Despite all of this, I know that there are still so many other people with gastroparesis out there, searching for guidance but not sure where to look. Attending the Mayo Clinic Social Media Summit would help me learn how to reach as many of those people as possible. Honing my social media skills will also help me to improve my advocacy efforts, increase awareness of gastroparesis, and start to bridge the gap between the medical community and the patient community. In addition, as a patient-advocate who has successfully built a strong community of followers, I’ll be able to share with other members of the Summit what I believe patients are looking for, especially when it comes to rare or poorly understood conditions.