In a recent survey of 611 chronically ill individuals, done by the National Invisible Chronic Illness Awareness Week committee, 53.27% of the respondents said that the most frustrating or annoying comment people make about their illness is “But you look so good!”
“Although telling someone they look good is often seen as a compliment,” says Lisa Copen, founder of National Invisible Chronic Illness Awareness Week “it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”
According to Copen, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend,” 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 for 2007, is an outreach to increase awareness that living with an invisible illness can be emotional challenge—as well as physical—and that more people than we would imagine are suffering silently.
Respondents answered the survey at www.invisbleillness.com and reported the following other annoying comments people tend to make:
• “Your illness is caused by stress.” (14.22%)
• “If you stopped thinking about it and went back to work…” (12.42%)
• “You can’t be in that much pain. Maybe you just want attention.” (10.95%)
• “Just pray harder.” (9.15%)
Carmen Leal, creator of SomeOne Cares Christian Caregiver Conference and author of “The Twenty-Third Psalm for Caregivers” says, “When someone appears physically normal people are less likely to show understanding and compassion. National Invisible Chronic Illness Awareness Week is an important opportunity to help families, businesses, churches, and communities understand that conditions without an outward sign are just as debilitating as other more visible illnesses and disabilities.”
Copen, 38, who has live with rheumatoid arthritis and fibromyalgia for fifteen years agrees. “We know that 75% of marriages impacted by illness end in divorce and 70% of suicides have uncontrollable physical pain as a factor.* There are hundreds of invisible illness such as diabetes, cancer, myasthenia gravis, fibromyalgia, chronic fatigue syndrome, and Crohn’s disease as well as mental illness and conditions such as bulimia or migraines. Regardless of one’s illness or level of pain, feeling isolated and misunderstood can be emotionally devastating. We are each responsible for learning how to effectively show compassion and understanding to those we can about, including the chronically ill.”
National Invisible Chronic Illness Awareness Week’s web site has articles, resources and will feature twenty online seminars during Sept 10-14, 2007. Guests include Maureen Pratt, author of “Peace in the Storm: Meditations on Chronic Pain and Illness” and Jenni Prokopy, founder of ChronicBabe.com. Outreach materials include t-shirts, silicone awareness bracelets and rack cards, appropriate for support groups or the work place state what to say and not say to a chronically ill person.
The theme for 2007’s invisible illness week campaign is “Living with invisible illness is a roller coaster. Help a friend hold on!”
For more information see http://www.invisibleillness.com or call 888-651-7378. National Invisible Chronic Illness Awareness Week is sponsored by Rest Ministries, http://www.restministries.org, a Christian organization that serves the chronically ill and HopeKeepers Magazine.
* Sources: National Health Interview Survey / Mackenzie TB, Popkin MK: "Suicide in the medical patient.". Intl J Psych in Med 17:3-22, 1987
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