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 Heather Meyer’s Essay:
All moms are caregivers to their children. However, not all moms are caregivers to a child with a rare disease that leads to chronic illness. It is not uncommon for moms who have this role to feel lonely and isolated even amongst their closest friends and family. When I found myself in this special position, I turned to the internet as one of my lifelines.
The first thing I did was to start looking for other moms who had children with similar issues to my daughter. Her initial medical intervention was a feeding tube, so I started looking for online support groups for parents of children with feeding tubes. The first place I found was a forum for parents of children with various chronic illnesses. I settled in there quickly and began networking. Networking on the forum then led me to ask the right questions of my daughter’s doctors, which eventually led us to the doctor who was able to diagnose her. I am now a hostess on that forum, providing support for parents who are just starting their own diagnostic journeys. I still receive an incredible amount of support and information there. It is invaluable to have an online community that I can turn to when I need help. Children with rare diseases are not always easy to find locally.
I was already a member on Facebook, and as time has gone by, I have collected more and more friends who are in the same special caregiver role that I find myself in. We support each other by not only talking about our children’s health, but our daily lives as well. I have found multiple groups and pages on Facebook relating to my daughter’s condition, all of which have been helpful in providing links to the most up to date information and research. I have also used Facebook as a way to spread awareness about my daughter’s disease.
Recently I joined Twitter. As an ethics and social policy major in college, I decided to pursue those interests on Twitter, rather than using it as a network for “friends”. I am very interested in health policy and bioethics, so I follow those types of organizations as well as doctors, hospitals, and patient advocates. I was astounded at the information I found. The articles that I have been linked to through these various twitter accounts have not only given me a lot to think about in my own pursuit of learning, but they have helped me immensely in my interactions with my daughter’s care teams. I understand better where her doctors are coming from and what their perspectives are, and I actually have become more trusting of her doctors and have learned how to best work with them. At the same time I have been able to share my perspectives as the mother of a patient, and I hope that helps health professionals learn more about the patient/caregiver side.
I can honestly say that I am rather new to social media, but I have been eager to jump right in and do what I can to learn more about it. I hope that by attending this conference I can learn more about how to best utilize social media in a way that both benefits me and my family, and allows me to help others benefit as well.