96 Percent of Illness Is Invisible

Sept. 29, 2006
Many people look good but feel terrible. Nearly one in two Americans has a chronic condition, and 96 percent of them live with an illness that is invisible.

The week of Sept. 11-17 was National Invisible Chronic Illness Awareness Week. The theme was "My Illness Is Invisible But My Hope Shines Through!" This is a major public awareness campaign sponsored by HopeKeepers Magazine, a consumer magazine that offers spiritual encouragement for those who live with chronic illness or pain.

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 effect on our emotional health than the physical pain," explains HopeKeepers Editor Lisa Copen, 37, who lives with rheumatoid arthritis and fibromyalgia. "Each day we must choose to have hope, despite how medications and alternative treatments may help or hinder us."

Copen is the author of a book, "Beyond Casseroles: 505 Ways To Encourage a Chronically Ill Friend."

"Part of our campaign is to encourage people to care enough to be informed," says Copen. "Just because someone isn't using a wheelchair doesn't mean that he or 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 a 5.5 x 8.5 card 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."

Three online seminars were held during the week that featured chronic illness coaches, authors, nutritionists, and other professionals. Promotional items like T-shirts, bumper stickers, and bracelets were available during the campaign.

For a complete list of 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!"