“Looks can be deceiving” say the Chronically Ill During National Invisible Chronic Illness Awareness Week

When you tell people who live with a chronic illness, “You look so good” or “You look like you’re feeling better…” are they encouraged or do they just smile at the irony? In a recent survey of 869 chronically ill individuals, done by the National Invisible Chronic Illness Awareness Week committee, 45.67% of people stated that they most often respond saying, “Thanks” or giving a simple smile, rarely sharing their true emotions. 36.55% reported that they typically respond more honestly by saying, “I’m glad I don’t look like how I feel,” or “Actually, I am still really hurting.”

“Logically, we know that people have the best of intentions,” says Lisa Copen, founder of National Invisible Chronic Illness Awareness Week and director of its sponsor Rest Ministries, the largest Christian organization that serves the chronically ill. “However the compliments make it seem like people believe we are no longer ill or the seriousness of the disease has passed, when in fact we’ve only tried to present our best selves on the outside, even though we feel terrible on the inside.”

According to Copen, 38, who has lived with rheumatoid arthritis and fibromyalgia for fifteen years, statistics show that nearly 1 in 2 people in the USA have a chronic condition and 96% of it is invisible.

National Invisible Chronic Illness Awareness Week, held September 10-16, 2007, is an outreach to increase awareness that living with an invisible illness can be an emotional challenge—as well as physical—and that more people than we would imagine are suffering silently.

Twenty online seminars at www.invisibleillness.com will address topics such as applying for disability, spiritual encouragement, parenting, time management, caregiving, mental illness and faith communities, and more. Guests include Scott Davis, leading attorney for those with fibromyalgia and Rosalind Joffe, a chronic illness coach and founder of keepworkinggirlfriend.com. Outreach materials consist of t-shirts, car static clings, silicone awareness bracelets, books, and rack cards, appropriate for support groups or the work place that state what to say and not say to a chronically ill person.

The survey also revealed some of those responses people with illness make when told, “You look so good!”
* Looks can be deceiving.
* I’m glad something on me is holding up.
* Yes, that’s why they call it an invisible illness
* Powder and paint make you what you ain’t!
* I’m in good shape for the shape I’m in.
* I fake it well.
* Really?

The theme for 2007’s invisible illness week campaign is “Living with invisible illness is a roller coaster. Help a friend hold on!” It is sponsored by HopeKeepers Magazine and Rest Ministries, Inc. Other sponsors for 2007 are Chronique Couture, www.relieve-migraine-headache.com , and DePaul University Chronic Illness Initiative.

For more information see http://www.invisibleillness.com or call 888-751-7378. Sign up for the Invisible Illness Week ezine “Update” and receive the first 40 pages of Copen’s book, Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.

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