Healing Words

Thanks to all my family and friends for all the love and support you gave me last year; that is what kept me going. I love you all. I had a scan yesterday, Friday 1/9/09. There is some spreading of the cancer. The good news is that the Avastine is still working, keeping the blood supply to that new growth from developing. There are also other drugs to try. Despite the news, I still feel like the luckiest man who ever lived.

This was the last blog entry by Gary Klatsky, an associate professor of psychology at the State University of New York at Oswego, before he died of brain cancer in early April 2009. Klatsky was ill for 17 months and blogged about his daily struggles with the disease, his loving feelings toward his family and his efforts to keep teaching. There were also snatches of humor: “Finally got enough hair for a haircut,” he wrote in the summer of 2008.

Klatsky was a colleague of Lisa Gualtieri, an assistant professor of public health and community medicine at Tufts, who mentored some of his students. When he became ill, he suggested that she follow his blog for updates. Gualtieri found his words compelling.

“I was fascinated by what he was doing,” she says. “It was primarily for his family and his students. He included medical images and photos of himself, and while it was not beautifully edited prose, it spoke about the ups and downs of dealing with cancer.”

Today and the past few days have been incredibly distressful. I have my scan late this afternoon and I meet with my oncologist tomorrow morning to go over the results. As a result of my stress level I probably have been taking it out on my family and can't apologize to them enough. After my last scan I was expecting bad news as i thought my physical condition was deteriorating. then my Dr said I had a dramatic improvement. This month I have been feeling great and expect good results. That makes me nervous.

Gualtieri, who studies the interaction between health care and new media, was struck by the way the blog seemed to help Klatsky and his network of family, friends and colleagues keep in touch and be supportive. It was a way to learn what her friend was going through without having to ask directly, for fear those questions might be intrusive. And she saw how Klatsky himself benefited from being able to express himself as he underwent his ordeal. She wondered if these kinds of blogs might have a broader purpose: could they help people with chronic illnesses cope with their condition?

She mentioned the blog to Pamela Katz Ressler, who was working on her master’s degree in the Pain Research Education and Policy Program at Tufts School of Medicine. Ressler, who is also interested in the role of social media in health care, decided to study health blogs as her capstone project. Gualtieri was her preceptor, and Libby Bradshaw, an assistant professor in the department, was her advisor.

Sharing Honest Opinions

Ressler devised a survey to learn more about health blogs, which she publicized in May 2011 on Twitter, Facebook, Boston.com’s health and wellness section and a variety of health forums. Out of 372 people who started the survey, 230 completed it, representing a wide spectrum of illnesses and conditions.  

In many cases, the participants said, writing about their illness helped them cope better with feelings of isolation and gave them a sense of purpose. “It has become an online journal,” wrote one, “where I have an outlet to discuss what I am feeling emotionally and physically, and it has helped my friends and family be kept up to date on things.” Several people said the blog helped them feel more connected to friends and family. “The support and love from others has helped me immensely during dark days,” one wrote.

Many said they chose not to share their blogs with their physicians or other health-care providers. One commented, “I don’t trust doctors to respect my feelings and opinions,” while another said that she “sometimes wrote about frustrations with the practice of oncology in general and some specific medical stuff, and felt it might have been awkward to share.”

Gualtieri doesn’t agree with that viewpoint, saying that reading health blogs would probably benefit the medical profession, because these intensely personal writings show how patients experience illness. “There’s an eloquence and level of detail that I find enormously informative, and sometimes heartbreaking,” she says.

While the bloggers recommended that others in their situation start blogging, too, they said that it’s not for everyone. People who are uncomfortable sharing personal information or who worry that writing about their condition in an online forum might affect their jobs or health insurance coverage should probably not write something that will be so public, some of the bloggers said.

Gualtieri and Ressler note that their survey was small, and that a self-selected group of illness bloggers responded. They have submitted their findings to the Journal of Medical Internet Research along with co-authors Bradshaw and Kenneth Chui, another assistant professor in the department. They think it would be useful for further studies to be conducted about health blogs. For example, they wonder in what situations people would most benefit from keeping a blog, and at what point blogging is most useful as an illness progresses or changes.

One thing is clear, though. The blogging helps people find meaning and purpose by connecting with others, says Ressler, and learning more about it will only serve to help more people.

“Perhaps,” she wrote in her research paper, “the process of communicating the experience of chronic illness and pain through blogging may be one way to assist in moving towards a more complete, holistic model of health and healing.”

Marjorie Howard can be reached at marjorie.howard@tufts.edu.