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. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3510726/
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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