It’s been years now, but I can still picture the articulate young woman with the mysterious disease who came to the Globe to see me. She was armed with a stack of medical papers and spoke with the ease of a scientist about possible causes, symptoms, and tests. But what was most striking was how much her identity seemed to be wrapped up in her illness.
I still have no idea what she may have had. She was clearly suffering – and angry. Yet she seemed unable to take comfort in the fact that her doctors could find nothing seriously wrong. In fact, she seemed stuck in what doctors call “the sick role.” That’s a shame.
Granted, stories abound about people who stick to their guns, resist the bland reassurances of busy doctors and keep fighting until they get the right diagnosis. More power to them!
In fact, that’s what happened to Dr. Martin P. Solomon, a popular Boston internist who works for Affiliated Physicians Group, based at Beth Israel Deaconess Medical Center.
Twenty years ago, Solomon was worried about a mole on his arm. He consulted dermatologists – “the three biggest guys in the city” – and all told him it was nothing. He insisted that it be removed. Sure enough, it was a melanoma, a potentially deadly cancer. “Had I waited, I wouldn’t be here,” he says.
But still, much of the time, contends Solomon in his new, self-published book, “Don’t Worry, Be Healthy – How to Avoid Obsessing About Your Health,” the American fixation on understanding every hiccup has become downright unhealthy.
“Worry displaces joy,” says Solomon, who certainly sees enough patients – 30 to 40 a day – to know. “People push joy out of the way, from fear or from fatigue.”
The bottom line is as simple as it can be hard to swallow: Get yourself checked out if you’re worried about something, and get a second opinion and more tests if you’re really worried. But once you’ve done all that and everything appears fine, get on with your life, including addressing the emotional issues – anxiety, depression or simply stress – that might be causing your troubles, or at least, hampering your ability to cope with them.
The “sick role” is a terrible trap, and oddly enough, people who really have a serious disease may be less likely to fall into it than people who have no documentable illness.
In one study, Dr. Arthur Barsky, a psychiatrist and director of psychosomatic research at Brigham and Women’s Hospital, interviewed people waiting for medical appointments in a clinic, simply asking them to describe themselves.
People who were not deemed by doctors to be hypochondriacs (defined as people who are not faking their symptoms but can’t be reassured when nothing is wrong) tended to talk about themselves as teachers, parents or to describe their hobbies, even if they had cancer. Those who were considered to be hypochondriacs saw themselves as patients.
In a review published in June in the Annals of Internal Medicine, Barsky and Dr. Jonathan F. Borus, chairman of the department of psychiatry at the Brigham, note that it’s normal for healthy people to report physical complaints every few days.
“Significant fatigue” is a problem for more than 20 percent of healthy adults, and musculoskeletal problems, for 30 percent, they note. Indeed, 86 to 95 percent of the general population has at least one symptom such as a headache, dizziness or heart palpitations in any two- to four-week period.
In many cases, Barsky and Borus say, it’s the belief that one is sick that causes distress. In one study they reviewed, people who hadn’t known they had high blood pressure had a threefold increase in days of work lost once they were diagnosed.
In another, telling healthy volunteers they had tested positive for a disease caused them to recall symptoms characteristic of the disease and to think they had acted in ways that could have put them at risk. In yet another, Barsky and Borus note, people who signed informed-consent forms that specified certain gastrointestinal side effects of a treatment were more likely to experience those side effects than those whose forms did not specify those problems.
Sometimes, obsessing about bodily symptoms and conveying this distress to other people is an indirect way of asking for attention. But this can backfire because, to keep getting that attention, you have to stay in the “sick role.”
One way around that is to agree with your doctor that, even though there seems to be nothing wrong at the moment, you’ll come back in a specified number of weeks or months. That accomplishes two things: It allows a window for re-testing, in case you do have a serious disease. And it lets you let go of your need to be “sick” in order to see the doctor again.
Another solution is to tackle the emotional component of hypochondria head-on.
At the Brigham, Barsky is running a study sponsored by the National Institute of Mental Health to see whether six sessions of counselling using cognitive-behavioral techniques helps ease hypochondriacs’ distress. This approach aims at teaching people to spot what things – thoughts, situations, behaviors – make symptoms worse and which make them better.
At Harvard Vanguard Medical Associates, psychiatrist Dr. Steven Locke, chief of behavioral medicine, also runs a 6-week program. It’s geared toward people who have have stress-related symptoms like headaches, or diseases like asthma that are exacerbated by stress; those with chronic diseases like irritable bowel syndrome or cancer who have a hard time coping emotionally with their illnesses; and to those, like the woman who visited me at the Globe, who have persistent symptoms that defy medical explanation.
Dealing more directly with the emotional causes or consequences of illness can not only decrease distress, it can save a health care organization money. In one recent study at Kaiser Northwest in Albany, N.Y., people who participated in a mind-body program cost the system nearly $1,000 less a year than similar patients who were referred to the program but opted out.
But saving money is not the point. Finding contentment is, and that’s important whether you, or someone you love, has a serious disease or not – as Dr. Martin Solomon found out the hard way. For years, he took only two week’s vacation. “I always felt bad when I went away,” he says. “I felt I should be here seeing patients.”
Then, several years ago, his wife was diagnosed with lymphoma. So for their 25th anniversary, they took the trip to Italy they’d planned for their 30th. They bought a bigger house on Cape Cod to accomodate their grown daughters. He now takes six weeks a year off. “We’ve learned to enjoy walks on the beach. We do more things together,” he says.
“I don’t have to tell this to patients with cancer. They know it,” he adds. It’s the worried well who need to hear it.
ILL OR HEALTHY, DON’T ASSUME THE ‘SICK ROLE’
If you and your doctor have appropriately pursued the symptoms that distress you and there still seems to be no cause, take heart. At a minimum, you should know you’re in good company – an estimated 35 to 50 percent of visits to primary care doctors are for problems for which no physical cause can be found.
But that doesn’t mean you’re not suffering, and it doesn’t mean you are powerless, either. Here are some suggestions:
Don’t assume the “sick role.” This means not thinking of yourself as a patient, but instead defining yourself by who you really are – a parent, spouse, worker, friend, gardener, whatever.
If you do have genuine restrictions on what you can do because of pain, disability or fatigue, make realistic concessions to those limits, but focus on what you still can do.
If your doctor does the appropriate tests and does give you reassurance, try not to reject it. If you get angry when the doctor says you’re fine, look deeper into your feelings. Ditto if you find yourself substituting a new worry as soon as you let go of an old one.
Ask yourself what factors other than disease might be contributing to your symptoms. Do you hate your job? Are you fighting with your spouse? Are your kids acting out? Are you fretting about money? If so, the answer may be to focus on the problem that really needs attention, not your aching back.