Patient bloggers are joining together to bring awareness to invisible illness issues, ranging from handicapped parking confrontations to why they hate hearing "You look so good!"
Who would guess that nearly half of the U.S. population lives with a chronic illness? According to a study by the Robert Wood Johnson Foundation, over 133 million people have an illness or condition, most of which are invisible, and many that cause daily pain. This is roughly about 1 in 2 people in the U.S..
Illnesses can range from Reflex Sympathetic Dystrophy to diabetes, multiple sclerosis and fibromyalgia, and painful conditions like back pain and migraines.
Eighty percent of internet users look online for health information, making it the third most popular online pursuit among all those tracked by the Pew Internet Project. And 65 percent of adults who go online have one or more chronic conditions.* Many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face, dealing with daily chronic pain.
National Invisible Chronic Illness Awareness Week, September 12-18, 2011, invites bloggers to play a significant role in the campaign for awareness surrounding chronic pain. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com, as well as inviting bloggers around the globe to commit to blogging about invisible illness issues.
Some examples patient bloggers have shared include: being asked to move from their seat while on a train for someone with a visible disability, comments heard when parking in a handicapped spot (legally) and the misunderstandings experienced when you are a young parent with a chronic illness and unable to do all the physical things healthy parents may do.
To help spread the word they have also created a meme, "30 Things About My Invisible Illness You May Not Know" that people have posted on Facebook, blogs and other social networks.
Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, "Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves, yet living life to the fullest."
Copen says blogs of patients aren't depressing like healthy people may assume. "Illness bloggers don't typically dwell on the logistics of symptoms, lab tests or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances and careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness."
Hundreds of people have blogged about invisible illness issues in the past two years and Copen's goal is to reach people through 500 blogs in 2011. Each person is encouraged to share something about their illness experience with Facebook friends, a few Twitter posts or even in the comments section of the Invisible Illness Week website.
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see the Invisible Illness Week site for details.
* Pew Research Center's Internet & American Life Project, August 9-Sept 13, 2010
Follow Lisa Copen on Twitter: www.twitter.com/lisajcopen
2 carpal tunnel ops. 4 miscarriges. C-PTSD. spinal stenosis. and more. all were/are diagnosed by many experts, some days, i can't leave bed. others, i can walk into market. many idiots have asked me, "what's your handicap?" i usually don't respond but when i do i say, "severe and dangerous brain damage." yeah, i did have a brain tumor removed 5 years ago but i'm not dangerous. usually, the rude comments are from obese folks who want my handi parking place. even struggling with cane i've been called names--faker, etc. i'm sick of being sick. but sicker are the creeps who question my disabilities. my own children are among them.
thanks for talking about invisible illnesses. tho i'd guess the few who read this are the ones with CP.
No one listens when I say I became obese from complications of the pain I experience. Unable to walk or move much even my children cannot hug me normal for the pain it causes.