October 20, 1999
Web posted at: 12:27 PM EDT (1627 GMT)
By Susan Milstrey Wells
(WebMD) -- At age 34, Sally has been sick for the past 21 years. As a teenager, she frequently missed school and fell asleep visiting friends. Extended illness prolonged her graduate studies in clinical psychology. Sally and her family thought she was just prone to being sick.
When, at age 24, she received a diagnosis of chronic fatigue syndrome, Sally denied that she had a chronic disease. "I'd felt this way for so many years that I'd normalized it," she says. But Sally now believes that denying she was sick kept her from taking the steps she needed to get well.
A widespread problem
Sally is not alone in having a chronic condition, one that creates persistent and recurring health problems. According to the November 13, 1996, issue of the Journal of the American Medical Association (JAMA), researchers estimated that by 1995, the number of people living with chronic conditions reached 100 million. Unlike acute infections or broken bones that heal with antibiotics and time, chronic conditions such as heart disease, diabetes, lupus, multiple sclerosis and inflammatory bowel disorders last for years, affecting nearly every aspect of a person's life. Yet the JAMA article noted that -- contrary to popular belief -- the majority of persons living with chronic conditions are not elderly or disabled. More than half are adults aged 18 to 64, and few of them report activity limitations as a result of their condition.
Learning to cope
If the majority of people with chronic health conditions are leading fairly normal lives, what's their secret? In a word, Sally believes its "acceptance."
Indeed, most individuals with chronic conditions learn to adapt psychologically to their illnesses. Researchers from the Netherlands found that individuals with arthritis, diabetes, cancer, renal disease and dermatologic disorders do not differ significantly from each other or from the general public in their mental health status, according to a report in the April 2, 1997, issue of JAMA. They generally report a better quality of life than what people imagine their own lives would be like with a chronic condition.
Still, accepting a chronic condition isn't easy. The following tips can help.
Acceptance is only about today.
It may sound trite, but when you struggle with a chronic illness -- one whose symptoms flare up often, without warning -- you must take each day at a time, realizing that each day will be different. One way to gauge and pace yourself is to use a 10-point rating scale. For example, 1 could mean being bedridden and 10 a total absence of symptoms. Most days Sally is 3 or 4; 5 is a good day for her. She knows there are certain things she can't accomplish if she's having a "3" day.
Acceptance is not an admission of failure. Sally has been unable to work since earning her doctorate, and she felt guilty about her inability to help buy the house that she and her husband had always wanted. But over time she learned that comparing herself with healthy people was self-defeating. Today, it helps her to remember that everyone has limitations of one type or another, and what counts is your ability to cope by means of your own abilities -- not someone else's.
Acceptance doesn't mean giving up. Getting sick can feel like hitting a dead end, Sally explains. The path you expected to take is no longer available. If you try to knock through the wall, you might become sicker. A better way to proceed -- one that is far from quitting -- is to adjust your thinking and find a new path. "Acceptance doesn't mean you're surrendering," Sally says, "it just means you're advancing in a new direction."
Acceptance means welcoming change. Adaptation may mean a change in everyday routines. You don't have to stop doing what you did before, but you may need to reduce the amount of time you spend doing it or scale back in other ways. Also, try and think outside the box. For example, when she is too tired to stand up to cook, Sally pulls a stool up to the kitchen counter. Who said you can't cook while sitting down?
Today, Sally is no more likely to deny that she has chronic fatigue syndrome than she is to deny that the sky is blue. "No matter how hard I might wish for the sky to be purple, the sky will still be blue and I will be unhappy about it," Sally says. Rather than using the limited energy she has wishing she were someone without her condition, Sally has learned that the most practical and healthy way to live is to accept her life with chronic fatigue syndrome and readapt to her changed physical abilities.
Susan Milstrey Wells is the author of A Delicate Balance: Living Successfully with Chronic Illness (Insight Books, 1998).Copyright 1999 WebMD, Inc. All rights reserved.