CaringBridge gives voice to patients, families: 'I am telling my story and I own it'

A lot of labels accompanied Tanya Bailey's throat cancer diagnosis.

Patient. Victim. Survivor.

The one she prefers? Author.

"Being called an author was so powerful, such a positive perspective," said Bailey, 51, of North Oaks. "I am telling my story and I own it."

The day that a biopsy revealed her malignancy, Bailey wrote her first post on CaringBridge. She logged on to the Minnesota-based platform to create a personalized website, then used it to update her social circle through an arduous course of chemo­therapy and radiation.

"I'm a therapist so I'm sensitive about boundaries. But something in me said, 'I can't keep this locked away,' " Bailey said. "Putting it out there gave life and form to what was running around in my brain. I could get out my fears and feelings and then I could let it go and rest."

CaringBridge opens a window on personal health stories as they evolve in real time. From their laptops or from a mobile app, authors document the twists and turns of their experiences, whether triumphant or tragic. CaringBridge streamlines communication from the patient or, more often, their exhausted caregiver, allowing them to post news on a one-stop site instead of calling a list of loved ones.

In the midst of the current health care crisis, CaringBridge has become a vital link, leveraged on behalf of the ever-expanding group of patients testing positive for COVID-19. The service provides those patients and their families with a valuable channel for outreach.

"Now more than ever, when so many are stressed and fearful, the need for this service is great," said CaringBridge CEO Liwanag Ojala.

When patients recuperate, their CaringBridge pages become a place for the narrative to unfold on a granular basis. The site allows the author's broader circle — the cousins, cribbage partners and college friends — to check in, read the latest journal entry and post encouragement and comforting comments in an online guest book.

"It was amazing how the second- and third-tier acquaintances showed up for us," said Peter Bailey, Tanya's husband, who authored updates when she was too sick and weary to do it herself.

"We invited them in and let them witness what was happening during our hardest time. It was intense and poignant and real. Illness puts a strain on a couple; the connections made the burden easier."

A history of healing

What became CaringBridge began in 1997, a year before Google was founded and a decade before the first iPhone. Software developer Sona Mehring created a webpage to support two friends who became parents to a premature baby. The site allowed them to post updates and, sadly, share the news of tiny Bridghid's death when she was nine days old.

Seeing how online messages of support and sympathy comforted her friends, Mehring helped initiate other such personal websites. By the end of the year, the fledgling startup, then known as Patient Internet Link, had mobilized 50 sites.

When CaringBridge obtained its nonprofit status in 2002, it was run entirely by volunteers; a year later, inaugural hires moved into its first office space. By then, there were some 11,500 personal websites on the platform. In 2004, the year Facebook was created, CaringBridge hit 1 million views.

"From the start, CaringBridge ensured that no one has to go through [their] experience alone, even if their community is not in their physical presence. It's a tool and a service that sits at the intersection of health care and the nonprofit and digital dimensions," said Ojala, who became CEO in 2016 when Mehring retired.

Today, 22 years after the concept proved its value, CaringBridge employs a team of 44 (its Eagan headquarters is empty as the staff works from their homes during the pandemic). Supported by donations, the nonprofit has grown exponentially and woven itself into the health journeys of hundreds of thousands of people across the globe. The platform calculated that an astonishing 40 million people logged on to CaringBridge in 2019 to write, read, share or send messages.

"Staying connected to emotional support from a community who cares helps people move ahead," said Ojala. "[Patients] can't always control their outcomes but everyone can find their path to healing, whatever that looks like to them."

Connections matter

Lately, dramatic stories of patients battling COVID-19 are being told on CaringBridge.

The site is filled with scores of individual sites set up by family members who write ICU updates after being briefed by their loved one's nurse or doctor. Journal entries tell of a brother "on the ventilator in deep sedation," a husband and father who is "not breathing on his own and running a very high fever" and a COVID-positive husband and wife described as "on the road to recovery."

Patients well enough to recover at home sign on to write detailed descriptions of their symptoms and struggles. Some have set up funding pleas and requests for meals and other assistance.

CaringBridge has also become a godsend for patients now hospitalized with non-COVID-19 diagnoses. Their caregivers, unable to visit them because of coronavirus-related restrictions, can post condition updates after communicating with their health care providers.

It's possible that when the current crisis is past, these personal stories will prove a valuable source for the study of patient support during a time of difficulty and desperation.

Researchers at the University of Minnesota are already mining CaringBridge journals to better understand the health care experience. Three years ago, the university began transferring 50 million journal entries to its supercomputers. After removing names and other identifying information, researchers have combed though responses to identify effective methods of support for both patient and caregiver.

"These journals are a rich and unprecedented resource. This collaboration lets us look at relationships, various aspects of how people interact and what they need," said Mary Jo Kreit­zer, founder and director of the university's Earl E. Bakken Center for Spirituality & Healing.

"CaringBridge shows us that meaningful human connections matter. It creates and keeps bonds. Users are teaching as they go through the process of living and dying."

Support and catharsis

"Loss is something you learn to live with. You get through it, you don't get past it," said Chrissy Vinje, 58, of Minneapolis.

Twelve years ago Vinje's husband, Tom, hit a bus while he was driving home. He had blacked out due to an aggressive brain tumor. Within days he had surgery and lost his ability to communicate.

That's when Chrissy found hers.

"I went on CaringBridge right away and wrote on it every day, sometimes from the hospital. I could feel the love and the energy in the comments, it was palpable. It got our story out there in real time," she said. "I'm the oldest of six and Tom was the youngest of six; I don't know how I would have managed without it. It would have been exhausting to tell so many people."

Tom Vinje died seven months after his diagnosis. For several years, his widow continued to write on his CaringBridge site while she processed the loss.

"People would check in, say I'm still thinking about you, I'm remembering Tom," she said. "Grief is an unforgiving emotion. It hits you when it damn well wants to. Writing it down is cathartic."

Social scientists have long recognized the psychological benefits of journaling. The simple act of putting words to feelings and then writing them on paper — or typing them into a document or webpage — can serve as a relief valve and clarify the author's experience.

"So often we take a passive role in our own health care; we step back and don't articulate our preferences and priorities. When people journal around health issues, it gives them a voice and helps them sort out who they are in this moment, in this journey," said Dr. Archelle Georgiou, a physician on CaringBridge's board of directors. "It's empowering."

It's been almost four years since Tanya Bailey's diagnosis and treatment upended her life. Today, her prognosis is positive and so is her outlook.

"Growing up, I got the message that revealing your troubles is a sign of weakness, the world is tough and you have to be tough right back," she said. "But that was a fallacy. This was my opportunity to break the spell, to say I can't and I won't go through life by myself. I put it out there and I was never alone."

Kevyn Burger is a Minneapolis-based freelance writer and broadcaster.