The power of relationships to foster healing is well known. So when we think about whole person health for a cancer journey, chronic illness, or even a major life event like a birth or death, it’s vital to consider where relationships come in. How can family and friends support you as a caregiver or as someone coping with a health event, and how can emotional connections help you heal?
On the reverse side, most of us have probably been lonely when we were sick, hurt, or taking care of someone. In my book “How Healing Works,” I talked about how loneliness affects us. Sharing our experiences, whether as caregivers or patients; receiving comfort; and having help with daily chores, children, and pets allows us to relax and rest. Such support helps us heal regardless of the physical illness.
Pulling the caring community together
For family members and other caregivers, however, doing anything besides the basics can be a challenge. This was true for Kathleen when her sister Shari had a sudden stroke at age 50. Along with Shari’s husband Mark and oldest daughter Melissa, Kathleen found herself at the hospital every day (and even some nights). She sat with Shari, was constantly available in case the doctors made rounds, participated in shift change updates with the nursing staff, and kept an eye on everything. “If an alarm went off, I wanted to know what it was. If a specialist came by, I—or Mark or Melissa—was always there.”
During this time, Kathleen was also the point person for every phone call and text. “It got to where I didn’t even want to look at my phone. I would be sitting in the hospital with Shari, trying to help her take a bite of Jell-O, and people would be texting with offers of help I had no time to respond to.”
When Shari moved to a rehab center and then to home, the need for updates lessened, but the offers of help streamed in. What could neighbors do? Coworkers wanted to drop off meals, and friends from church offered to help with Mark and Shari’s younger children. Distant in-laws wanted to know if their cards and gifts had arrived. Finally, Kathleen was able to take a few hours away from her sister’s side and organize all the support using a platform called CaringBridge.
About CaringBridge
When my patients struggle with the weight of a health or caregiving journey, I point them to CaringBridge. CaringBridge is a nonprofit organization that provides an online platform designed to connect patients, caregivers, family, and friends during health journeys. Now a four-star charity, it was founded in 1997 by Sona Mehring in Eagan, Minnesota, to organize support for friends who had a premature baby. Mehring’s goal was to simplify communication and provide emotional support during their challenging time.
What started as one friend’s determination to help others led to the development of CaringBridge as a secure, ad-free social network where users share health updates, coordinate tasks, and find support. It can also be helpful for military families during deployments.
Users can post photos and share links to fundraising platforms and to videos on sites such as YouTube or Vimeo. Along with expert resources, patient and family stories, a “Bookshelf” section, and links to supportive partner organizations, there are two main features:
- CaringBridge sites, which are personal, protected pages where patients or caregivers post updates and receive messages of hope.
- SupportPlanner, a tool for organizing practical help, such as meal deliveries or pet care, and coordinating visits and events.
How Does CaringBridge Help Clinicians and Staff?
For health care professionals such as family practitioners, oncologists, nurse practitioners, physician assistants, and others, I recommend CaringBridge or similar resources designed to help patients and caregivers.
Using these types of platforms enhances patient satisfaction by fostering a robust support system. CaringBridge offers some patient and family education in the form of tips (e.g., “What to Say to Someone Who is Grieving” or “10 Things to Avoid When a Friend Has Cancer”), and expert opinions from partners such as the American Cancer Society are available. Families and caregivers can also use the platform for journaling, which can be highly therapeutic.
Encouraging patients and families to use CaringBridge can help you and your office focus more on care delivery and specific health information. You may also want to encourage patients and families to check out CaringBridge’s partner network, which includes resources for cancer care, respite care, older adults, parents, and much more.
Finding strength in community during cancer treatment
The SupportPlanner feature was invaluable for Elena when her husband Martin was diagnosed with stage 3 colon cancer at age 42. Suddenly, Elena felt overwhelmed by the responsibilities of supporting her husband through aggressive treatment plus caring for their kids.
“The diagnosis came out of nowhere,” Elena recalls. “One day we were planning our summer vacation, and the next we were scheduling chemotherapy appointments and trying to figure out how to explain everything to our 8-year-old twins.”
One of Elena’s coworkers suggested CaringBridge when she noticed Elena constantly stepping away from her desk to respond to messages from friends and family. Within an hour of setting up their site, Elena posted the first update on Martin’s diagnosis, treatment plan, and what the next few months might look like.
Using the SupportPlanner feature, Elena was able to coordinate meal deliveries, rides for the twins to their activities, and even housecleaning help—all without managing separate text chains or phone calls. Friends from their neighborhood, colleagues from work, and family members from across the country could see what was needed and sign up.
“Having everything organized in one place didn’t just save time,” Elena explains. “It gave us emotional space and support as well as practical help.”
CaringBridge is accessible 24/7 worldwide. It is free and relies on donations from users.
For concerns about confidentiality, users can choose for sites to be public (anyone can view), require visitors to register with CaringBridge, or limit site access to people the site owner approves. There are no advertisements, and CaringBridge aligns with HIPAA principles by giving users full control over what health information they share. It is encrypted to keep communication private between users and their networks.
Since it started, CaringBridge has grown significantly. More than 300,000 people use it every day, with millions of annual visits. A new CaringBridge site is created every 12 minutes.
Emotional toll during long-term illness
There are several aspects of CaringBridge and similar platforms that I see as important for whole person health and healing. Providing a therapeutic space for journaling and sharing updates helps users manage emotional stress. It also has the very real, practical effect of allowing loved ones to reach out any time without interrupting those who are on the health journey and may not be able to respond. This helps combat time toxicity, a side effect of cancer and other illnesses that can compound the burden for patients and families and create stress. In turn, reducing stress can help alleviate caregiver burnout.
In Martin’s case, the emotional benefits extended beyond practical help. “What happened next was really beautiful,” Elena says. “Not only was I saved from having to repeat the same information over and over, but the comments provided so much support for our family. Martin read the messages during his chemo sessions. They lifted his spirits on the hardest days.”
For family who lived far away, the regular updates made them feel connected to Martin’s journey in a way that sporadic phone calls couldn’t. By the time Martin’s cancer was in remission, their CaringBridge site had received over 12,000 visits and hundreds of supportive messages.
“What started as a practical solution became much more meaningful,” Elena reflects. “It became our community of hope.”
CaringBridge connects patients, families, and caregivers with a larger network than any one of them may have at their fingertips or on their phone. The support network can be global, and updates are available to loved ones and friends in any time zone. In addition, sharing updates and talking about experiences encourages reflection and gratitude, which is a wonderful way to help people heal.
Resources
CaringBridge: www.caringbridge.org
How We Heal Campaign: www.howwehealcampaign.com
Photo by Curated Lifestyle on Unsplash.