96% of Illness is Invisible – Awareness Week Validates Those Who “look so good!” but Feel Awful
SAN DIEGO (2009) Nearly 1 in 2 Americans has a chronic condition, and 96% of them live with an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. Sixty percent are between the ages of 18 and 64.
September 14-20, 2009 is National Invisible Chronic Illness Awareness Week. The theme is “A Little Help Gives a Lot of Hope.” It is a major public awareness campaign sponsored by Rest Ministries, an organization that offers a supportive environment for those who live with chronic illness or pain.Sept 14-18 NICIAW features a free virtual conference with 4 seminars each day available to listen to live or download later.
Paul J. Donoghue and Mary Siegel, co-sponsors of the week and authors of Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness say, “Invisible chronic illnesses (ICI) have symptoms that are difficult to see and impossible to measure such as pain and fatigue. So those with ICI frequently encounter not compassion and support but impatience and skepticism from physicians and loved ones.”
“Living with an illness that is invisible to those around us can often have a more devastating affect on our emotional health than the physical pain,” explains Lisa Copen, 40, the founder of Rest Ministries who lives with rheumatoid arthritis and fibromyalgia. She was recently awarded the Audience’s Choice Award for Women’s Health Hero of Our Bodies Ourselves out of nearly one hundred applicants. “Each day we must choose to thrive, to do something out of the ordinary, or make a new friend. It’s easy to get in the habit of living a life of survival.”
Copen is the author of a book, Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend. “A large part of our campaign is reminding people that just a little help to someone who is ill or hurting can give them a lot of hope.” says Copen. “Just because someone isn’t using a wheelchair doesn’t mean that she doesn’t have a disability. Friends and family of those with chronic illness care a great deal about what their loved ones are going through, but oftentimes the invisibility of the illness sets up an environment for misunderstandings and even doubt about the validity of the illness. We hope to increase awareness of how many people ‘look great’ but are hurting deeply.”
Outreach includes various events: the distribution of free literature such as cards with multiple ways to encourage a chronically ill friend. Other resources include You Look So Good: A Guide to Understanding and Encouraging People With Chronic, Debilitating Illness and Pain. Churches and organizations across the U.S. will be participating by in having people share their stories. T-shirt, bumper stickers and other promotional items are available, including PSAs and sample proclamations. Seminars will be held online during the week.
For a complete list of events and resources visit www.invisibleillness.com or call 888-751-7378. “The feeling of knowing that one’s illness and pain is acknowledged can have a great impact on how a person copes with living with illness,” says Copen. “We hope that by recognizing people with illness rarely feel as good as they look, they will begin to feel better understood, leading them to a more invigorating life!”
Getting Closer to Myself – Guest Blogger: Lisa Copen.