Saturday, 15 March 2014

Guest Post From Robin Magee. Evolution of Blogging

Robin McGee and I met at the Patients Canada Conference in 2013. She was brimming with enthusiasm to meet so many other people who were obsessed by health and patient issues to almost the same extent as she is.  I say almost because there aren't many of us who have written a book. 

Robin's book comes out in May and is titled "The Cancer Olympics".  I can't wait to read it.Robin's been blogging a long time in a private space and now she's ready to come out.

Here's Robin's post: You can find her @TCOrobin

Welcome to March Break. I am sure many of you are off skiing or sunning or visiting relatives. I am spending the week in Ottawa with my elderly parents, trying to provide what help I can. My parents still live in the house I grew up in. My mother’s cancer has spread to her lungs and liver now, and inasmuch as possible they hope she can stay in their home. She is tired and often in pain. I am glad I am able to do things for her – today I took her to get her hair done.

One more revision round was required on the book, and the (hopefully) final proof went in today. More errors that I am astonished that I and my professional proofreaders never saw: “latter” instead of “later,” quotes unclosed, punctuation misplaced, a misspelling of the word “tumour.” I am getting nervous that I won’t have it in time for the launches, but the publisher reassures that it should be no problem. Where are my fingernails?

This week I discovered a fascinating research paper about those who maintain illness blogs like this one. (Ressler, P., Bradshaw, S., Gualtieri, L., Kwan Ho Chui, K. Communicating the experience of chronic pain and illness through blogging. Journal of Medical Internet Research, 2012, 14, e143. Published online Oct 23, 2012.

Using an online survey, the authors collected information from 230 of my counterparts: people who have kept a blog throughout the course of a severe illness journey.

The authors wrote very poignantly about the role of blogs for patients: “In her book, Narrative Medicine: Honoring the Stories of Illness, Charon [16] describes the experience of patients and families as they enter the divide between the sick and the well, a separation that often feels huge and unbridgeable to those navigating a new way of being:

“These divides between the sick and the well are unspeakably wide. Leveraged open by shame, rage, loss, and fear, these chasms can be unbridgeable. And yet, to get better, the patient needs to feel included among those who are not ill. The sick person needs to continue to be, somehow, the self he or she was before illness struck.”

Chronic pain and illness may have an isolating effect on individuals, changing their perceived roles in society and challenging their ability to find meaning in life and their illness. Creating connections between the world of the sick and world of the well can be important in the positive psychosocial functioning of individuals.”

The authors concluded: “Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations. Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness.”

I was interested to see that many of the bloggers became patient advocates – that this is a natural evolution for many besides me. Here are some of the qualitative responses made by my fellow bloggers:

“It started out with just my personal stories and then I started sharing research and attempted to be an advocate.”

“My blog content has changed mostly as I have a desire to spread more awareness and create a message that others will better relate to and understand.”

“I’ve come to terms with being ill, so there’s less ‘oh goodness it’s weird and scary encountering (insert fact of disabled life).’ I’ve become more political. And there’s more stuff without a disability angle.”

“I take more of a patient advocacy stance.”

“First I was helped, now I am helping...a reminder that I am part of the world.”

Recently, I have followed the blog of one of my CRC counterparts: a young mother, only 42, with a six-year-old child. Diagnosed only one month ago, she has metastatic disease in her liver and her lungs, and has just embarked on full-tilt chemotherapy. Reading her posts and the responses of her community is like stepping into the past: the terror, the bravado, the unknown.

Perhaps one day – God willing – I will see her write a post just like this one.

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