I have been very quiet for the last couple of months because of my Trigeminal Neuralgia (TN). Shortly after the new year, the medication I relied on for almost three years to reduce my pain suddenly stopped working. I could barely open my mouth to eat or drink for weeks, and I slept both day and night. Bummer. During this time, several Health Central friends inquired and sent me well wishes. I was touched by their concern, patience and support.
This is the same kind of support many chronically ill people have come to rely on from online sites. I often read a post or a question that sounds as if the writer needs help or feels really sad or alone. I offer the best I can, and especially now I know how comforting that can be.
HealthCentral MS members understand that while MS has characteristics similar to many other chronic conditions, the differences stand out for those of us touched by MS. MS is often difficult to understand for others and is often isolating. In my case, I did not feel alone because other HealthCentral members reached out to me. I know the Internet is a valuable source for support.
The Centers for Disease Control (CDC) tells us that almost half of U.S. adults have a chronic condition, and some have more than one. Health care professionals tend to focus more on acute illnesses and injuries rather than the increasing need for long-term chronic illness care. They are less prepared to help new patients manage their chronic disease with confidence and skill in an affordable and timely manner. Therefore patients are often not inclined to reach out to health professionals for specific help; rather, they gravitate to the Internet for help.
The Internet is inexpensive and reaches a large number of people who have the same or similar questions. People living with a chronic condition like who are active on the Internet usually write blogs, participate in a disease-specific group, search for information and share tips. MSers learn skills to deal with their own disease management, and they learn to cope with their new emotions that may begin showing up with their drastic lifestyle changes. The Internet is great as an information tool as well as an interactive communication tool.
In addition to learning skills to manage their own disease, patients can learn how to develop more effective relationships with their caregiver and health provider. Patients who rely on the Internet have a better quality of life than those who do not. This is peer support at its best.
Personally, I have many online friends that I have met through blogs as well as condition-specific sites. I have known some for years, following them as they follow me. I have often been impressed and especially inspired. Their encouragement has led me to undertake challenging projects, and I feel my quality of life is better with the Internet. I believe that is also true for others.
Share your stories, make friends online, tell about tips that have helped you and enhance your own quality of life as well as for others. for others.
Links and Notes:
1- Chronic Disease and the Internet, full text, p. 2
Patients Learn Chronic Disease Self-Management Online, Medscape Education
Chronic Disease and the Internet summary, March 24, 2010, entire report down-loadable
Susannah Fox, Associate Director, Digital Strategy
Kristen Purcell, Associate Director, Research
Sponsored by Pew Internet and American Life Project, California HealthCare Foundation
Stories and quotes from Patients Like Me and Health Central
Published On: March 05, 2012