National Invisible Chronic Illness Awareness Week (NICIAW)

Discussion in 'Fibromyalgia Main Forum' started by auntyemnga, Sep 12, 2006.

  1. auntyemnga

    auntyemnga New Member

    FYI - September 11 to Septmember 17 is National Invisible Chronic Illness Awareness Week (NICIAW).

    Their saying this year is: My illness is invisible but my HOPE shines through!

    I ordered a t-shirt, bumper sticker and bracelets. I'm wearing my shirt every day this week (yes, I'm washing it every day)!! : ) I just found out about this earlier last week. This is their 3rd year.

    They are having different chat room seminars this week.

    This is their press release. I removed all web site url's, phone numbers and e-mail addresses.

    Nearly 1 in 2 people live with a chronic condition
    PRESS RELEASE: FOR IMMEDIATE RELEASE
    CONTACT: Ms. Lisa Copen, founder & director

    96% of Illness is Invisible – Many Look Good but Feel Terrible

    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 11-17, 2006 is National Invisible Chronic Illness Awareness Week. The theme is "My Illness Is
    Invisible But My Hope Shines Through!” It 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 affect on our
    emotional health than the physical pain,” explains Lisa Copen, 37, editor of HopeKeepers Magazine 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 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."

    Fifteen online seminars will be held during the week featuring chronic illness coaches, authors, nutritionists
    and other professionals. Promotional items like t-shirts, bumper stickers and bracelets are available.

    “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!”
    ###
    INTERESTING FACT: HopeKeepers Magazine is published by the sponsor of Rest Ministries. It’s the only Christian
    consumer magazine specifically written for people in chronic pain. BOOK INFO: Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend; Author: Lisa Copen; dimensions: 4.25 x 7 in.; 94 pages; Rest Ministries Publishers 2005; ISBN 0-9716600-6-9.

    *(Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation.).
    chronic illness, chronic pain, spiritual, health, awareness week, fibromyaglia, christian, heal, depression, support groups, caregivers, arthritis, mental illness, fatigue.


  2. auntyemnga

    auntyemnga New Member

    I'm glad you were able to find the site. I felt it was so inspiring!

    Auntyem