Hidden Illnesses: Looking Good But Feeling Not-So-Fine

More than 133 million people in the United States suffer from at least one chronic condition, according to the Centers for Disease Control and Prevention. That’s almost half of our population – a rather shocking number to me because half of our population doesn’t look sick.

And therein lies the rub, says Carol Sveilich of San Diego, who has written a book about those living with what she calls “hidden illnesses.” These millions of people appear perfectly fine but are dealing daily with difficult physical and psychological challenges. Her book, “Just Fine: Unmasking Concealed Chronic Illness and Pain” (Avid Reader Press) should be required reading for nurses because, well, let’s be truthful; we tend to get a bit hardened sometimes (I’m as guilty as the next) and we can be quick to label a patient as a hypochondriac.

Svelich’s book provides nurses with insight to those who carry the burden of “invisible” chronic illnesses but often get no sympathy or understanding because they appear to be “just fine.”

Think about it. You can appear well even if you have a serious illness like lupus, Crohn’s disease, post-polio syndrome, epilepsy, hepatitis, multiple sclerosis, arthritis or cancer. Symptoms of these illnesses may not be visually apparent, so people who are chronically ill "often have a believability problem with friends, family and coworkers because they appear perfectly healthy and able-bodied,” Sveilich says.

The first part of “Just Fine” features in-depth discussions of health care options, common challenges, lifestyle adjustments and coping tools because life is uncertain for the chronically ill. They never know from day to day – or hour to hour – whether they will experience pain, have to leave work or be able to care for their children.

The second half of the book features original portraits and profiles of people who volunteered to share their stories, tell how they feel about their chronic illness and how they live with it.

Sveilich knows the subject well. She has lived with Crohn’s disease and fibromyalgia for more than two decades, and had to leave her job as an academic counselor at a university in 1998 because of her disease. Despite often debilitating problems, she has a very healthy attitude about life and how to live with chronic disease.

The coping mechanisms she offers include:
• realizing that you aren’t alone
• believing in yourself even if others question your illness
• speaking matter-of-factly about your illness
• learning to honor your limitations
• seeing flare-ups as challenges, not crises
• educating yourself on your disease
• joining a support group
• realizing that your invisible illness makes you stronger and more resilient in ways you have yet to discover.

A parting thought: The medical care costs of people with chronic diseases account for more than 75 percent of the nation’s $2 trillion medical care costs, according to the CDC. Nurses can play an integral part in helping patients with chronic illnesses to lower the costs of their health care by providing some strategies for coping. "Just Fine" is a good resource for nurses, patients, families and anyone who helps care for those with chronic illnesses.

You can reach Carol Sveilich at WriteFaceFoward@yahoo.com, or visit her Web site: http://www.writefaceforward.com/.