Invisible Disability

Colorado Community Newspapers. Elbert County News, Douglas County News Press, Castle Rock News Press, Parker Chronicle. Rhonda Moore. Invisible Disability. April 2006.

The day Wayne and Sherri Connell married, they knew their union was special. What they didn’t know was that together they would one day reach out and touch the lives of thousands.

The Connells, of Elbert County, are the founders of the educational forum the Invisible Disabilities Advocate, a nonprofit organization formed in 2004 as a result of the couple’s personal experience.

Sherri Connell lives with multiple sclerosis and Lyme disease, two diseases with symptoms not always visible to the naked eye. After the couple married in 1994, Wayne and Sherri decided to educate their extended family about her symptoms via a pamphlet with information on how to live with what she coined “an invisible disability.”

Her [experience extended beyond their loved ones] to reach out to other families whose lives are changed by an invisible disability and whose numbers run in the millions.

“The Invisible Disabilities Advocate reaches across all chronic illness groups by providing a common resource for the caregivers, family and people suffering from illness, pain and fatigue,” Wayne said.

In a report summary for a Capitol Hill briefing in Washington, D.C. on women’s health and chronic illness by the National Institute of Nursing Research, the institute said more than 40 million people are limited in their daily activities by chronic illness.

With up to 45 percent of the population affected by a chronic illness, Wayne [who founded IDA] said the organization bridges the gap between advocacy groups serving a specific illness to provide resources for all who live with a chronic condition.

“An invisible disability or chronic illness can be mental disorders such as bi-polar disorder or depression, or it can be something like lupus, fibromyalgia, chronic fatigue or Reflex Sympathetic Disorder,” Wayne said. “Someone with a visible disability can spend their lives explaining what they can do when they look like they can’t. People with an invisible disability spend their lives explaining that they’re not able to do things but they look like they can.”

The challenge facing families and caregivers in cases where symptoms are invisible motivated [Wayne to compile Sherri's writings into] the booklet, “But You Look Good.” A guide for caregivers, spouses, patients and families who live with an invisible disability, its readers report the information is life changing, Wayne said.

Among the many challenges facing families touched by an invisible disability is the need to see the disability to believe it, he said.

“We’ve had husbands on their knees asking their wife for forgiveness for the way they’ve treated them after they get the book,” he said. “They might have spent years saying it could be improved by a positive attitude. Sometimes a person suffering from an invisible disability is showing a positive attitude just by taking a shower that day. The book has been an amazing thing.”

Wayne developed a series of seminars based on information gleaned from the book to help people learn to live a full life with chronic illness, he said.

Joined by Dr. Jeffrey H. Boyd, author of “Being Sick Well,” two classes are available at Parker Adventist Hospital April 28 and 29.

In the seminar, Boyd addressed four main causes of chronic illness and uses case histories, personal testimonies, and a variety of resources to illustrate not just how to cope, but how to live joyfully even in sickness.

Wayne outlines the guide from their book, “But You Look Good” with practical tips on what to say, what not to say and how to help someone who lives with a debilitating condition. The book has elicited enormous response on the Invisible Disabilities Advocate Web site, with more than 10,000 visitors a month, he said. “We want people to understand they’re not alone out there,” Wayne said.