Purpose From Pain
By Susan Jurgelski
Sometimes when people lightheartedly ask how she’s doing, Kelley Hornberger smiles automatically in response.
But inside, she’s not smiling.
She’s cringing.
Hornberger, a 36-year-old Lancaster mother of two, is sick, but you’d never know it from her outward appearance.
She has degenerative disc disease, endometriosis, arthritis, chronic chemical and food allergies, and Parvo B-19 (Fifth disease), which affects the joints.
The problem is, her conditions are invisible, despite the fact that she suffers from severe pain and disability.
"People think you’re not as sick as you feel," she says. "I’m limited in what I can do. I can’t enjoy everyday things, like doing things with my kids, and I struggle with practical things, like cleaning and yardwork."
This week, Hornberger is participating in Chronic Invisible Illness Awareness Week, a national initiative that includes Internet seminars and online networking. Guest bloggers will post about invisible illness, and there’s even a downloadable badge that says, "I’m blogging for Invisible Illness Awareness Week."
The conference, Hornberger says, enables people who can’t travel to take advantage of the offerings.
"What’s awesome is we can connect with each other and get information from guest speakers, and we can do it from home."
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There are more people in Hornberger’s shoes than you might think.
According to the U.S. Census Bureau, nearly 1 in 2 people are living with a chronic condition, and about 96 percent of the illnesses are invisible.
Although the illnesses may be different, sufferers have a lot in common, according to 39-year-old Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 and was diagnosed with rheumatoid arthritis and fibromyalgia at the age of 24.
Illness impacts families, careers, finances and daily living.
And when the illness doesn’t show, it can also adversely affect other people’s perceptions.
For instance, people may stare and question why someone who doesn’t appear disabled has a handicapped parking placard and parks in a handicapped parking spot.
Laurie Edwards, author of "Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties," has blogged about her illness (mastocytosis, an immune-system disorder) since 2006.
"When you are a young adult, people expect you to put in long hours to establish a career, to jump into the dating world and to build a life for yourself," she writes. "But they certainly don’t expect you to be sick."
The week’s theme is "Hope Can Grow From the Soil of Illness."
Copen found a new sense of purpose in her pain by founding Rest Ministries.
"Now, through my illness ministry and books on aspects of coping with illness, I have the chance to use what I experience each day to reach out to others," Copen writes on www.invisibleillness.com. "It’s my hope that they will also find hope despite their illness …"
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Hornberger takes comfort in her family, friends and fellow members of Manor Brethren in Christ Church.
Because of her degenerative disc disease, she has had two spinal fusions and is awaiting another surgery.
Her husband Dale and children Dustin, 13, and Brianna, 10, are affected by her illnesses, too.
Forget family vacations, as Hornberger can’t sit for more than an hour at a time. Even day excursions, like trips to Knoebel’s amusement park, are virtually impossible.
"My husband has spent vacations helping me recuperate from surgeries."
Hornberger’s husband recently did a ride-along at the Pocono Raceway, and she was unable to attend.
"It’s hard when it impacts your life like that," Hornberger says.
"We need to bring the word out to other people that there are a lot of different disabilities we need to be aware of.
"While we may look good on the outside, we struggle with poor health on the inside."
Invisible Illnes Week
WHEN: The national online awareness initiative with Internet workshops will continue through Sunday.
DETAILS: Go to www.invisibleillness.com.
(c) 2008 Intelligencer Journal. Provided by ProQuest LLC. All rights Reserved.