Why People Blog About Their Illnesses (Research)

Writing about one’s illness in a private journal has risen to another level with technology. Now, many people share ongoing public records of their illness journeys. On the Internet, readers all over the world can empathize, advise, and become inspired by illness blog posts. Not much research exists about this growing phenomenon, but researchers on patients' blogging are beginning to explore psychosocial effects and motivating factors for initiating and maintaining a blog.

One Internet survey study included a 34-item online questionnaire created, tested, and promoted through online health/disease forums. Respondents provided information regarding demographics, health condition, initiation and upkeep of blogs, and dynamics of online communication. The survey was completed by 230 blog respondents who were predominantly female and generally highly educated.

Respondents reported the following:

1)   An illness blog increased connections with others, decreased isolation, and provided an outlet for sharing their illness stories.

2)   Blogging promoted accountability for themselves and others. Explaining their stories created opportunities for understanding and coping with illness.

Blogging about their illnesses empowers people, makes them feel less isolated and more proactive in encouraging themselves and others. While looking for blogs written by older adults, I discovered “Caroline’s Breast Cancer Blog,” which includes images, videos, and other resources. This blog is written by Caroline Ronten, who was first diagnosed with cancer  over thirty years ago. Outspoken and feisty, Caroline’s blog dates back to 2007. She says, “I started this blog so I could keep my friends and family up on my dealings with breast cancer, but now it has evolved into my take on the medical world as well as my medical ups and downs.” You can view Caroline’s cancer blog here, and she can also school you on a few other ailments and problems in the world.

  

Health care blogs and health care websites can be persuasive. They are used by many to impact the thoughts and actions of others. Is one more persuasive than the other? Here’s what the research says: https://www.linkedin.com/pulse/health-blogs-vs-websites-frances-shani-parker?trk=mp-reader-card

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Diabetic Alzheimer’s Patient Released from Hospice Care and Nursing Home

If you think all people in hospice care never leave alive, you don’t know jack about Raynell. My diabetic hospice patient with dementia, Raynell shared a room with four other patients at the nursing home. Her fourth roommate was an imaginary admirer named Robert, whom she loved like the devil loves holy water. Conversing with Raynell required that I drop to the floor periodically and search for Robert under her bed. This was preceded by her screaming, “Get him! He’s going under the bed!” after he (affectionately?) pinched her swollen and tingling diabetic legs. It’s love, remember? But one day, she surprised me with talk about leaving hospice care and the nursing home:

Raynell requested my assistance by saying, “I was wondering if you could help me find another apartment. I’ve been thinking about looking for a new place to stay, maybe a place closer to where I used to live. This apartment building is too noisy. Just close your eyes and listen to all the talking, buzzers, and everything. People come into my place without even knocking. They just walk right in and go through my closet and drawers. It’s not right. Three ladies even moved in with me when I wasn’t looking. Now, I can’t get them out.”

“Whoa! That’s a surprise! I didn’t know you wanted to leave here. Are you sure moving is the best thing to do while you’re not feeling well?”

“Lately, I’m feeling much better. I need a change. Even Robert had to leave, so you know it’s bad. But I’m very glad about that. He’s gone to live in California. I don’t think he’ll be coming back again.”

“A lot sure has happened since I visited you last week. You never said you wanted to move before or that the other people who live here bothered you so much. All this really shocks me.”

I thought about this interesting conversation a while. It was the first time Raynell ever mentioned moving to an apartment and, even more astonishing, the first time she ever said Robert wasn’t hiding under her bed. Two weeks later, she was released from hospice care because her health really had improved. She moved to another nursing home near her son’s house. I guess Robert knew his time was almost up and decided to leave before he got left.

Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

© Frances Shani Parker

Yes, it’s rare, but patients are released from hospice care. Some live where they are or move to another location. Consider that with various diseases causing the need for hospice care, it is difficult to predict someone’s death with accuracy. Also, receiving quality healthcare and support from others can improve a patient's health. And when an imaginary admirer named Robert knows it’s time to leave, the patient may be moving in that direction, too.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog