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.
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