It’s easy to feel alone when you’re diagnosed with mesothelioma. The 3,000 Americans diagnosed with the cancer each year rarely meet anyone else with mesothelioma. They rarely get to connect with someone else who can truly relate to their condition.
Unless they’re online.
A growing number of people with cancer are starting blogs, a Web log that follows their experience with the disease. One such blogger is Kasie Coleman, a mesothelioma survivor who balances family life with running her own bakery. Kasie has found blogging therapeutic and helpful in that it is helping her to process the experience and connect with others who can relate on a personal level.
“I’ve found more people who are diagnosed with it,” she said. “Because it’s so rare, I used to feel like I was the only one.”
Support from friends and family is important to anyone facing cancer. Knowing that loved ones are there to help and comfort in times of need can ease a cancer patient’s concerns about their present and future health. But knowing someone who is facing the same cancer can offer a sense of support that no one else can offer.
“To reach people who are going through the same thing — they can relate, I can relate,” Kasie said. “Most people say ‘I feel sorry for you,’ but to know someone living with it and to know that not everybody is dying from it, that’s been the most helpful to me.”
Patient Blogs Meet Unique Needs
Mesothelioma patients aren’t the only ones taking advantage of their Internet connection. A 2011 survey by Pew Research Center reports that of the Internet-using adults in the United States:
- 27 percent track health indicators online, such as symptoms or side effects.
- 34 percent read about someone else’s health or medical experience online.
- 18 percent have gone online to find others with their health concerns.
Many of these people are looking for health information, answers to medical questions, or someone else who might have their diagnosis or symptoms. Patient blogs are among the primary places people turn to for online medical information outside of sources like WebMD.
Many patient bloggers spend a lot of time researching their condition and then share what they find on their blog, eliminating some of the legwork for others. Patient blogs also serve as a place for people with cancer to track their health and responses to treatment. By some estimates, there are more than a million health bloggers.
One patient blog platform, called CaringBridge, is widely used by people facing medical issues to keep friends and family updated. Kasie used CaringBridge to keep her family up to date while she was undergoing treatment for mesothelioma.
“It saved me from having to say the same thing a hundred times over,” she said. “You get tired of saying it over and over.”
Writing for Health
Writing and journaling have long been viewed as therapeutic tools. According to the Center for Journal Therapy, reflective writing emerged as a form of therapy in the 1960s.
In recent decades, clinical trials on the benefits of reflective writing were published. Some of them found that people with cancer who used writing therapeutically reported better physical health, reduced pain and required less health care services. Other studies reported the longer-term benefits of expressive writing, including:
- Improved immune, lung and liver function
- Fewer stress-related doctor visits
- Improved mood
- Reduced blood pressure
- A sense of better psychological well-being
- Improved working memory
Studies conducted by Dr. James Pennebaker found that writing about emotionally challenging events or feelings for 20-minutes time period over three to four days increased immune system functioning. Pennebaker’s studies suggest that writing may play a role in the body’s ability to process stress in a healthy way. Reduced psychological stress as a result of reflective writing could reduce the overall amount of stress placed on the body.
Writing to Connect and Heal
Among the most beneficial aspects of blogging that mesothelioma patients enjoy is the rare opportunity to connect with someone else who has mesothelioma. At the end of blogs are comment forms where readers can leave a message in response to the blog.
“The rewarding part is when people comment and leave responses,” Kasie said. She finds it exciting to know that others with mesothelioma are reading her words even though she’s never met them. Her family and friends are a great source of support for her, and so are the comments she receives on the blogs she writes.
Kasie said blogging also helps her to slow down and process what happened to her.
“The blog, it keeps me grounded,” she said. “I get so busy with the bakery and everything, and I live life so normally when I sit down to write the blog.”
Being a mother, a wife and a business owner keeps her so busy that she rarely took time to recognize what happened to her until she started blogging.
“Sometimes it can be overwhelming,” she said. “It reminds me of what I’ve been through, what I lived with, because I tend to forget. When I stop to write, it’s like ‘Wow, this is a big deal.’ Other people see it as a big deal, but I don’t because I’m so busy all the time, I never stop.
“When I sit down to write, I’m able to write the article in no time because it starts to flow, because I take the time to stop and concentrate on that.”
A 2012 study surveyed patient bloggers about the benefits of blogging about their health experiences. Participants reported that blogging increased their connection with others, decreased isolation and offered a forum to share their medical story. The patient bloggers also reported that writing made them gain insights about their experience that fostered a sense of purpose and a sense of greater meaning.
Kasie can relate. She said blogging about her experience has helped her to gain a different perspective.
“It’s kind of like sitting in your subconscious,” she said, “and when you sit down and have to write about it, it just reminds you of how precious life is.”
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