After diagnosis: Patients, families find or build supportive networks
SALT LAKE CITY — At first, Jay Yasuda tried to get the doctor to step back from the diagnosis, to offer another option. She had a husband and kids and a life that involved work and travel and laughter and joy. She didn't want a liver transplant or the "or else" that would come if she didn't get one.
"Flabbergasted and shocked" is how the Orlando, Fla., woman remembers her reaction to word the Hepatitis C virus had killed her liver.
It took two weeks for the severity of her situation to sink in. Six months to get listed. Then an astonishingly short two more weeks to receive a new liver, so dire had her condition become.
In the following two years, she would decide she needed a support network of some sort to get through the aftermath of outliving and replacing one of her body parts. When she didn't find what she needed, she set out to build her own.
So many, so few
There are no counts on support groups in the United States: There are simply too many different types. There are groups for new moms and those struggling with everything from alcohol abuse to Huntington's disease to irritable bowel syndrome. There are also no counts on how many websites offer illness-related online forums or blogs on health-related topics.
No one has quantified the need, either: How many people face a chronic illness, a debilitating disease, acute trauma, an addiction or just a daunting challenge and seek extra support in addition to regular care? But the human yearning to find others who share a crisis is clear in the hundreds of online disease-specific forums, the uncounted but numerous support groups, the blogs and other networks that spring up around illness.
At Johns Hopkins in Baltimore, "preliminary research shows that support groups can enhance quality of life," says clinical oncology social worker Elisabeth Carrino-Tamasi, who runs a support group for adults with brain tumors. She hopes to reduce the distress — psychological, emotional, social and spiritual — that oftentimes comes with a cancer diagnosis, interfering with both treatment and coping ability.
There is "huge therapeutic value" in realizing one is not alone, Carrino-Tamasi says.
A little structure
Across the country in Sacramento, Calif., at a support group for people who have or love someone with mental illness, Bettie Reinhardt sees people who speak openly of their challenges and others who sit, quiet and watchful. Reinhardt, acting director of National Alliance on Mental Illness California, believes "it may be a good way for some folks to get comfortable if they're not ready to say, 'Gee, this is my problem.' "
As a group facilitator she emphasizes staying in the "here and now" as much as possible. Some people with mental illness relive painful moments repeatedly and often with profound regret. Others obsess about the future, which may seem terrifying, she says. When they stay grounded in what's actually happening, it's easier to solve problems and tap group wisdom.
"There are a lot of ways to try to teach (one) to move along in constructive paths," she says. A supportive community builds both hope and the ability to cope.
Finding hope and coping are universal goals for support groups, regardless of the condition around which they form. And that is what people seek as they read blogs and scroll the forums. How can I help my child with his brain injury? Can I manage my medications enough to go to my daughter's graduation? What will happen when dad doesn't remember me?
Find what works
In a support group, you can say things that your sister or best friend just wouldn't understand because they haven't lived it, says Reinhardt. You can share resources. She can't endorse a provider. But she can tell someone who's looking for help to go to a support group and see who else is dealing with the same issues and who and what helped them.
A support group is not for everyone, Carrino-Tamasi points out. "I think there are many people, caregivers and patients alike, who don't want a group. For some that's more emotional distress and brings up unwanted feelings." She knows patients who've thrived instead with individual counseling. For others, the collective presence is powerful. She says people need to investigate what works best for them.
Yasuda lived two hours from the transplant center and she had no local organ transplant support group. Google helped her build a community. She blogged and read the blogs of others she found with keywords like "liver transplant" and "Meld," the score used to position a person on the transplant waiting list." She left comments and other bloggers commented back.
Her goal was simple: "I was getting their experience. Did everyone feel as crappy as I did? Did they have complications I was having? What did they do? That information was invaluable, like a book I could read ahead to see what happens. Doctors are always 'wait and see.' I can handle anything, just about, if I know what's coming. But lack of information … is not a happy place for me."
It took Jerry Bishop eight years to figure out he needed help after his young wife, Cindy, was diagnosed with multiple sclerosis. He didn't find the support group he needed already in place near his Boston home so he tried to start one himself. The challenge was too much at the time, with her illness and the needs of their two young children.
"Life was not very good for anyone in our house right then," he says.
Some challenges are too big to go alone, though, so he kept looking and eventually found the New Jersey-based Well Spouse Association. He now co-organizes a Boston chapter.
His group is a real-life sampling of the diverse need for outside support. Twice a month the members come, young and old, mostly the spouse-caregiver of someone with a long-term serious challenge: stroke, traumatic brain injury, spinal cord damage, Parkinson's, Alzheimer's. One man's wife has water on the brain, another a rare blood disorder.
Online to the rescue
Amy Tenderich, editor-in-chief of Diabetic Connect, one of numerous Alliance Health Network online forums, is an expert on diabetes. But she knew little about it when she was diagnosed with type 1 in 2003, at age 37, after her third child was born.
Because of her age, healthcare providers assumed it was type 2. Armed with insulin and little else, she struggled mightily to control the disease. She had so much trouble she stopped driving her children places; it was too dangerous. She did her own research, learning the language of the disease, but she craved connections with others. "I was desperate to find real people and answers to my questions," she says.
Her husband suggested she try blogging. She also went to industry events and created a diabetes network. "It's incredibly important and empowering to connect with other people." Alliance Health later bought her blog and hired her.
That's the promise of health-centered social networking, says Stead Burwell, whose company, Alliance Health, is building an open and free independent platform in health.
Sharing the load
Patients will increasingly carry more of the burden for their care, he tells the Deseret News. "There is profound need for patients to come together and talk, to understand different treatment options and pathways to care — and the cost of care."
Healthcare providers, often strapped for time and with limited resources, can't provide all the attention patients crave. Online, people can reach across rivers and mountains and miles to find others on a similar healthcare journey. In the physical world, what's available can be very different from one community to the next.
Yasuda's diagnosis in Florida didn't come with a visit from the pair of volunteers who introduce themselves as John and Dave as they regularly make the rounds of the transplant center at Intermountain Medical Center in Murray, Utah. John got his liver transplant around 2001, Dave a few years later. They are hope in human form, ready to answer questions and reminisce about their own recoveries, while proving, no words needed, that life, after transplant, goes on.
Yasuda wishes she'd had that and that there'd been a support group locally. She'd have gone. She wanted one for Gene, her husband. "It's hard on the caregivers," she says. Her kids, now in college, grew up immersed in her illness.
It has been a hard journey and she's developed a pragmatic approach to healthcare. "I'm a particular patient these days," says Yasuda. She won't wait for hours when she has a scheduled appointment, for instance. If it happens much, she'll change doctors. "They're busy. Their time is valuable. But mine's borrowed," she says.
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