As a patient I had already discovered that the best way to find the in-depth learning I needed was to talk to communities of patients. Sjogren's World helped me to realize I had Sjogren's Syndrome long before I got a diagnosis. I joined a yahoo group of people with shingles who held my hand and supported me with information from their experiences. In another more social group, after ten years we share the good and bad as life goes on.
On the #MedX Engage/Empower course and Twitter discussion on February 20th, 2014 I heard Gilles Frydman @gfry and Roni Zeiger @rzeiger talk about the way patients form networks of microexperts and "amplify the collective intelligence of the members."
I think that's what we're all trying to do with our blogs. Add another voice to the rivers of patient experience that are starting to grow in strength and power. The current is moving away from the patriarchal hierarchy where health care knowledge is held by a few.
My life with chronic disease developed in the usual way. I started with pain, depression and feeling that I was weak and unable to fully participate in a normal life. It was not possible for me to have a full life in all of the areas that were important. If I worked full time then social life, career development and even family would suffer due to lack of energy. I proceeded like this for years - my doctor said my RA was well-controlled but obviously the lack of energy affected my life so his version of "control" did not match what I expected.
Love to give directions but hoped for more energy than an inukshuk.
But there were some turning points - when I successfully advocated for treatment change and another when an offhand compliment encouraged and even energized me.
Now I have adapted to the life I have and the results have been unexpected and positive.
The second reason I blog and share on social media is that I benefit too. This statement from the research paper below really makes sense to me.
Communicating the Experience of Chronic Pain and Illness Through Blogging by Pamela Katz Ressler, RN, MS, HN-BC,#1 Ylisabyth S Bradshaw, DO, MS,#1,2 Lisa Gualtieri, PhD, ScM,#2 and Kenneth Kwan Ho Chui, PhD, MS/l
"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."
It's all about the connections. There's no other way possible to connect with such a great group of people involved with and interested in health care at every level.
This post is part of a blog carnival: "Why do you blog or share through social media about your illness?"
Here is a link to a previous post that I called Fruit vs the Blog exploring the question of which is better for your health - eating fruit or blogging? Of course there's no way to compare.