National Invisible Chronic Illness Awareness Week

Chronically Ill Unite to Spread the Word About Awareness of Invisible Illness and Pain

Nearly 1 in 2 people live with an invisible chronic illness and many are coming together this week to increase awareness that they do not feel as well as they may look.


San Diego, CA -- (ReleaseWire) -- 09/12/2011 --Patient bloggers are joining together to bring awareness to invisible illness issues 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 USA.

Illnesses can range from Reflex Sympathetic Dystrophy to diabetes, multiple sclerosis to fibromyalgia, or 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% 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 with daily chronic pain.

National Invisible Chronic Illness Awareness Week, September 12-18, 2011, invites bloggers to have a significant role in the awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues.

For example, some patient bloggers have shared about being asked to move on a train from seats for those with disabilities, the comments heard when parking in a handicapped spot (legally), and the misunderstandings 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 create 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, was diagnosed with rheumatoid arthritis at the age of 24 in 1993, and a few years later fibromyalgia. She began the awareness week in 2002. "Although 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 patient blogs 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, 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 also share something about their illness experience with Facebook friends, a few Twitter posts, or even in the comments section of the web site.

If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see for details.

* Pew Research Center's Internet & American Life Project, August 9-Sept 13