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/.

Taking Care of Number One Is Not a Luxury

Are nurses more subject to developing depression than other professions?

Probably, according to a report published by the U.S. Substance Abuse and Mental Health Services Administration in October 2007. The report didn’t single out nurses, but it did find that 9.6 percent of full-time “health care practitioners” between the ages of 18 and 64 suffered from major depression.

Compare that to a rate of 7 percent among workers in general.

And according to the same report, those in the 18-to-25-year-old bracket had the highest rate of depression.

Stress is one of the risk factors that experts say contributes to depression, and nurses on the front lines at hospitals and clinics certainly experience this. Decisions made throughout the day can have vital consequences – a thought that must be in the back of every nurse’s mind as he/she begins a shift. They know their mistakes can result in more than just dollars lost or a recipe-gone-bad.

According to a recent article in a nursing trade magazine, T. Larry Myette, MD, MPH, an occupational health physician at the University of British Columbia, attributes the high demands placed on nurses and their limited ability to control circumstances as reasons for experiencing stress.

This only gets compounded with understaffing – one of the reasons that nurses are leaving the profession.

Consider the findings of the annual staffing survey conducted by the American Nurses Association. The most recent one was compiled in May 2008. It found that slightly more than half of the 10,000-plus nurses who answered the survey were contemplating quitting their jobs.

Just less than half of those attributed inadequate staffing as the reason.

Almost a quarter of all respondents said they were thinking of leaving nursing altogether.

That’s a lot of experience and talent to lose.

Another study commissioned by Gannett Healthcare Group found that more than one-third of the nurses polled would consider leaving their current positions. They had a wish list, too, for the new job: a good schedule, more pay and more respect – all factors that could help stem the development of depression.

Nurses have one more risk factor for depression, and this one is self-induced.

They tend to put themselves at the bottom of the list when it comes to meeting the needs of the people in their professional and personal life. Women, in general, tend to do this far more than men, and women who go into helping professions – nurses, teachers, therapists, social workers – tend to be the worst offenders. Nurses must learn that taking care of ourselves is not an act of selfishness. Neglecting your needs can bring on resentment and depression, and then you’re no good to anyone.

What factors in your workplace cause you to feel stressed?

Have you ever considered leaving nursing because of stress and/or depression?

What do you do to take care of yourself?

Tell us about it.

A Rose for Nurse-to-Be Jessica

Here’s to Jessica Terry, an 18-year-old high school student who, despite doctors’ inability to provide a diagnosis for her sometimes severe GI problems, came up with the answer.

Terry says she wants to become a nurse and she is just the type of investigator that the profession can use.

The Sammamish, Wash., teen has suffered from abdominal pain, diarrhea, vomiting and fever for eight years, according to a story that appeared on www.cnn.com. Despite many attempts at diagnosis, her illness remained without a name until the Advanced Placement student looked at a slide containing her tissue from an intestinal biopsy. (Her entire class had decided to study her slides because she had been ill for so long.)

After searching and searching, Terry discovered a granuloma where pathologists had seen none – an indication of Crohn’s disease.

That, of course, is the bad news and the good news; Crohn’s is a serious autoimmune disease, but at least she now knows what she’s dealing with and can begin proper treatment.

Kudos, also, to the local pathologists who helped teach Terry and her classmates how to examine, read and interpret slides.

I hope that when the admissions committee at whatever school Terry chooses to attend is deciding whether to admit her to the nursing program, they consider her tenacity and passion for learning and solving problems. Her desire to learn and succeed – to consider possibilities when others have given up or have come to a dead end – are just the qualities we need in today’s nurses.

Hats off to you, Jessica Terry. I hope you are able to realize your ambition and wish you every success.

Fair Food: Tastes So Good; Yet So Bad For You

It’s that time of year when the county fairs begin to appear all over the country, and I’m thinking of all the nurses who are on standby at fair infirmaries, just waiting for the cuts, bruises, heat stroke and gastric catastrophes to come through the door.

I’d imagine that if the artery-clogging fair food doesn’t bring on a myocardial infarction, there will at least be a need for vats of Pepto Bismol.

That was my thought at breakfast as I perused the newspaper marveling at the creativity and courage some have shown in developing carnival cuisine. Just check out this list of some of the offerings by vendors at the San Diego County fair. Someone’s been working overtime to make really unhealthy food even worse.

The Kookie Cookie grabbed my attention first. This delicacy consists of a breaded-and-fried chicken patty tucked between two jumbo oatmeal-raisin cookies and slathered with cream cheese and strawberry jam. The jury seems split on the tastiness of this creation, and the worthiness of its $7 price tag.

And who could resist deep-fried s’mores, chocolate-covered bacon (I’m oddly drawn to this one – sweet and salty – yum), and deep-fried green beans? I must confess to having tasted this last offering and I’m here to report that they are pretty darn good -- even addicting -- probably because they don’t taste like green beans.

One of this year’s new entries, which experts predict to fail, is the Zucchini Weenie. I think the name is genius, but the taste maybe not so much. Described as a hollowed-out squash stuffed with an Oscar Mayer wiener that is batter-dipped and deep-fried, the ZW has been deemed “a bland, slippery snack on a stick that no amount of the accompanying ‘lite’ ranch dressing can save.”

My guess is that the zucchini people and the hot dog people rarely travel in the same circles, and the ZW will not bring them together.)

The wisdom of fair food seems to be that if you deep fry it and/or put it on a stick, it qualifies as an offering at any event that includes Ferris wheels and hog-calling contests.

At the Iowa State Fair, you can find fried pickle-on-a-stick and hot bologna-on-a-stick. The Minnesota State Fair tempts visitors with one-third of a pound of sliced bacon, fried and caramelized with maple syrup, and served on a stick with dipping sauces.I also found praises for hash-brown potatoes molded into a ball using cheddar cheese, bacon, green onion and sour cream, then deep-fried and served – you guessed it – on a stick.

One fairgoer from the Deep South wrote about his memories of chowing down platters heaped high with breaded and deep-fried alligator, barbecued alligator ribs and fried alligator legs. His favorite stick food: alligator sausage Cajun-style. All of the aforementioned must , of course, be accompanied by pistolette -- a French roll stuffed with spicy peppers, cheese and tomatoes, and/or onion flavored hush puppies.

A fitting closure to this feast: frozen grapes and chicory coffee.

Nurses: ‘Fess up.

What’s your favorite fair food and do you still indulge?

What’s the unhealthiest fair cuisine you’ve ever seen or eaten?

Tell us about it.

Dumbing Down College Curriculum Is Dumb

When was the last time you heard of a college decreasing the number of credits needed to earn a degree?

That’s what may happen at a community college near me.

In a few days, the board will vote on allowing students to earn an associate of science in nursing degree that would eliminate a two-semester American history course that everyone else attending the college must take. It would decrease the necessary units for the nursing degree from 80 to 74.

The school also offers an associate of arts in nursing degree that does require the American history course.

Honestly, I was little horrified to learn about this. The New York-based League for Nursing Accrediting Commission has requested the college offer a 74-unit degree or lose its accreditation.
To its detriment, the commission first recommended in 1999 that the college develop a 72-unit degree. The college stood its ground, maintaining an 85-unit requirement. Then in 2007, the commission threatened that it would withdraw accreditation if the college did not reduce the credit requirement, according to several newspaper accounts.

It took a second threat for the college to draft the 74-unit degree program, and now they’ve got their back to the wall. If they don’t offer the watered down program, they won’t get accreditation, and that would be doing all of their students a disservice.

I’m feeling like the astonished mother whose child has just done something really stupid. I want to ask the commission, “What on earth are you thinking?”

According to a newspaper article, the commission has not said why it wants the college to offer a degree that doesn’t include a history course. My call to the commission went unreturned.

I’m not the only person who feels like the commission is asking the college to dumb down their requirements. I agree with a recently retired history teacher who bemoans the civic illiteracy in our country. Possessing a general knowledge of our history and how and why our government operates is essential to being good and useful citizens, regardless of what profession you choose.

Sure, high school students get American history as part of their curriculum, but a college-level class should help students to understand history more deeply and thoroughly.

Thankfully, the college president said that he expects this change will affect only a handful of students out of the school’s 33,000, and that counselors will encourage nursing students to choose the associate of arts degree over the associate of science. This seems like a wise course to take, and will give prospective students something to think about. Hopefully the students will see the folly of eliminating American history -- especially if they aspire to further education.

What do you think?

The Problem With Health Care in America: A Must-Read

I’m not a speedy reader, so it took me a while to get through “The Cost Conundrum,” a lengthy but fascinating and highly readable article that appeared in the June 1 issue of The New Yorker magazine.

It explores the cost and quality of health care in this country and how it can differ greatly from one locale to the next and why. Don't worry; there are practically no numbers or statistics.

The article is a must-read for any health care professional, most especially those nurses and doctors who have the power to decide what medical services patients receive -- or not.

The author, Atul Gawande, is a surgeon and journalist on staff at Brigham and Women's Hospital and The New Yorker, and has written best-sellers. He served as an advisor to President Clinton, and graduated from Harvard Medical School. He has numerous degrees, including a master’s in politics, philosophy and economics, which is probably why he can examine health care from a perspective different from other physicians.

After what I’m sure was months of talking to health care providers across the country, and citing the conclusions of various studies, Gawande points out that costs and outcomes vary highly and that more procedures do not equal better outcomes.

He talks about the “culture of money” that exists in some medical groups, and concludes that “we are witnessing a battle for the soul of American medicine. Somewhere in the United States at this moment, a patient with chest pain, or a tumor, or a cough is seeing a doctor. And the damning question we have to ask is whether the doctor is set up to meet the needs of the patient, first and foremost, or to maximize revenue.”

Partly to blame for high costs and not-so-great outcomes is that “many physicians are remarkably oblivious to the financial implications of their decisions,” Gawande maintains. “They see their patients. They make their recommendations. They send out the bills. And, as long as the numbers come out all right at the end of each month, they put the money out of their minds.”

I saw an example of this firsthand recently.

A relative – a 30-something woman whose husband recently lost his job and their health insurance – had a lot of pain in her left leg below the knee. Turns out she sustained a stress fracture of the tibia, which was diagnosed by an orthopedist who took X-rays. Then he said he’d really like to get an MRI, too, “to get a better look,” but regardless of what he saw, the treatment was to be the same: no weight bearing for eight to 10 weeks.

The woman questioned the need for the MRI since it wasn’t going to change the treatment, and because she’d have to pay for it. In the end, she had the MRI at a cost of $1,000. She was upset because no one could give her a solid reason for having the MRI, but went ahead, fearing something terrible might happen if she didn’t.

The side story: In calling to compare the prices of an MRI, she found huge discrepancies. One free-standing facility charged $500; the local hospital charged $2,339. The reason? “The hospital operates on a different business model.”

And why this woman paid $1,000 instead of $500 is a long story that includes the confusing and frustrating process of applying for Medicaid.

Gawande cites many examples of practices like the Mayo Clinic that focus on what is best for the patient. Mayo, he points out, is “among the highest-quality, lowest-cost health-care systems in the country.” While visiting there, he saw real team effort in caring for patients -- "doctors, nurses and even the janitors” who sat in on weekly meetings “working on ideas to make the service and the care better…”

There is so much more to this eye-opening ,7,000-word feature, which you can read at http://www.newyorker.com/reporting/2009/06/01/090601fa_fact_gawande). You’ll see that Gawande is not pushing for socialized medicine. What he does suggest is funding research “that compares the effectiveness of different systems of care,” and establishing a national institute for health care delivery.

He says we must bring together “clinicians, hospitals, insurers, employers, and citizens to assess, regularly, the quality and the cost of our care, review the strategies that produce good results, and make clear recommendations for local systems.”

Read the article and tell us what you think.

Unattainable Beauty: Harmful or Harmless Fantasy?

It’s about time.

Someone finally has not only addressed the issue of impossible standards of beauty set forth by fashion magazines -- we’ve heard talk of this before -- but someone is actually doing something about it.
According to the May 28th issue of the New York Times, glam photographer and “image-maker” Peter Lindbergh has brought this discussion to the forefront by creating several covers for the French version of Elle magazine. They feature models sans makeup and Photoshop magic.

“My feeling is that for years now (photo manipulation) has taken a much too big part in how women are being visually defined today,” Lindbergh wrote in an email to the Times’ reporter. “Heartless retouching should not be the chosen tool to represent women in the beginning of this century.”

Mr. Lindbergh, I salute you.

This issue is of concern to health professionals. Fostering the idea that there are actually some women with flawless skin, perfect facial features, sculpted bodies and wafer-thin waistlines is in great part responsible for the proliferation of eating disorders and depression among between five and 10 million people in the United States.

Ninety percent of these are women.

Other statistics from the National Institute of Mental Health paint a sad picture. Its estimates suggest that:
• Each day, Americans spend an average of $109 million on dieting and diet related products.
• As many as 15 percent of young women adopt unhealthy attitudes and behaviors about food.
• An estimated 10 per cent of female college students suffer from a clinical or borderline eating disorder; half of these suffer from bulimia.
• An estimated one in 100 American women binges and purges to lose weight.
• Approximately 1 percent of men have anorexia nervosa, bulimia or binge-eating disorder.
• An estimated one-third of all dieters develop compulsive dieting attitudes and behaviors.Of these, about one-fourth will develop full or partial eating disorders.
• Estimates suggest that as many as 10 percent to 15 percent of eating disorders are fatal.
• In a study of children aged 8-10, approximately 50 per cent of girls said they were unhappy with their size.

To France’s credit, health officials there have been pushing for a law mandating that magazines tell readers when and how they have altered photos of models.

“But editors of American publications, who last year resisted such a proposal within their trade group, the American Society of Magazine Editors, have also noted a backlash against images that appear manipulated to push an idealized standard of beauty,” the Times article said.

Do you agree with the stance of photographer Peter Lindbergh – that fashion and glam magazines have a responsibility to disclose to readers what they’ve done to alter photos?

Or do you think the mission of fashion and glamour magazines is to create a fantasy and that this is essentially harmless?

Is it important for nurses to be aware of the influence of fashion/glam/women’s magazines?

Tell us what you think.