By Sona Mehring, Founder and CEO of CaringBridge

Life can often times bring unexpected health challenges. In the midst of a health journey with sudden, unpredictable turns it is important to know how to best cope with the changes ahead. A chronic kidney disease (CKD) diagnosis can take a person by surprise, leaving him or her with great uncertainty and the need for extra support from others who care. Simply knowing family and friends are there to offer encouragement and assistance can make all the difference in learning how to cope with this change in life.

But often times receiving that tangible love and support becomes extremely difficult when loved ones are miles away or have responsibilities that keep them from offering the care they wish to give. That’s where a personal website like CaringBridge can help to bring loved ones together when health matters most.

CaringBridge is a nonprofit organization that provides free websites where family and friends can share information, love and support during a serious health event, care and recovery. It’s a convenient way to build an instantaneous network of encouragement when maintaining a close connection may not otherwise be possible.

Creating a personal CaringBridge website is simple. A CaringBridge author/user sets up his or her site through an easy online process, and can then begin providing health updates and photos for others to view. Family and friends can also leave messages in the author’s guestbook, creating a safe place for the patient and his or her loved ones to share, listen and offer support during the health journey.

“When people provide each other with support and encouragement -- that can make the difference in a person’s life between ... surrendering to hopelessness and ... finding the gumption to keep going,” Dr. Charles Raison, an assistant professor of psychiatry and behavioral sciences at Emory University School of Medicine, said in an interview with CNN.

Preserving strong relationships during a health condition like CKD is important, but there’s no need to feel as though the details following the diagnosis need to be shared with virtual strangers or even casual acquaintances. Many use Facebook or Twitter to connect with others online, but sites like these are often more suitable for providing quick updates on broader life topics rather than in-depth health updates. CaringBridge provides a more intimate location where patients can feel free to express as much or as little as they want to their closer network of supporters.

Reducing Anxiety through Centralized Communication
Whether faced with dialysis, transplantation, or other treatment, the process can quickly become cluttered by the added stress of keeping friends and family updated on the latest progress. CaringBridge can provide clarity and a sense of control by providing a central location for communication to take place, giving loved ones the opportunity to receive consistent and timely updates when it is most convenient for them.

One mother used her CaringBridge site to update others on her daughter Julia who had Stage III Wilms’ Tumor (cancer of the kidney). “We received so many calls and e-mails from our loved ones checking on Julia, and CaringBridge gave us a way to provide an update once instead of having to recount it over and over again,” says Emily Mangual.

Some individuals also choose to use their site to post details about their daily, practical needs, as well as preferred times for others to call or visit. This reduces anxiety for their network of supporters, eliminating the guessing game of how they can best be of help during treatment.

Finding Release and Encouragement When You Need It Most
Many patients have found that writing down their feelings and experiences on their CaringBridge journal has served as a therapeutic outlet, enabling them to focus on what’s important.

“I discovered that writing the journal entries gave me a way to help make sense of it all,” Manguel says. “I started to include anecdotes about our family life, and Julia’s site became my blog about our family of seven and how we lived during and after Julia’s treatment.”

Having a record of their health journey on their CaringBridge site has provided numerous people with a way to look back and remember the encouraging words they received from so many caring individuals along the way. For many, being able to re-read the guestbook messages of love and support from others during difficult times makes all the difference in the world. Even the youngest patients look forward to hearing the encouraging words from others in their guestbook. Julia Manguel was only five years old during her treatment and received messages from teachers, friends (or parents of friends) and family members she had never met before. “She asked us to read the guestbook entries to her almost every day,” Julia’s mother says. “She still asks occasionally to go back and read some of the entries.”

Using a resource like CaringBridge means having the opportunity to not only receive love and support, but to inspire and encourage others when life throws the unexpected. Changes will come - welcome or not, but learning how to deal with life’s twists and turns is where the challenge lies. It’s in that learning process that the power of friendship and encouragement can be seen at its greatest. With the backing of a caring community connected through CaringBridge, dealing with chronic kidney disease can become a much easier road to travel. 

CaringBridge is a registered 501(C)(3) nonprofit providing free websites that connect family and friends during a serious health event, care and recovery. A CaringBridge website is personal, private and available 24/7. It helps ease the burden of keeping family and friends informed. The websites are easy to create and use. Authors add health updates and photos to share their story while visitors leave messages of support in the online guestbook. For more information, call 651-789-2300 or visit www.caringbridge.org.  

Sona Mehring is the founder and chief executive officer of CaringBridge, a social network created in 1997 to keep family and friends connected during a serious health event. 

This article originally appeared in the November 2010 issue of aakpRENALIFE. 

Posted 11/30/2010.

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