SHOULD ANYONE HAVE
TO LIVE WITH PAIN?

Should Anyone Have To Live In Pain?
Rosenfeld, Arthur. Parade. New York: July 20, 2003

Millions of Americans cope with persistent pain that goes untreated or is inadequately treated, even though the means exist to bring them relief. In this article, Arthur Rosenfeld---author of the new book "The Truth About Chronic Pain"---explores the world of the pain patient and suggests what can be done to make it better.

"Often, it feels as if my arm, my leg and the left side of my face are on fire," says Esther Reiter of Chicago. "When that pain starts, it doesn't stop, though I can block it when I sleep."

Reiter, 60---who has a brain condition called thalamic pain syndrome---is one of an estimated 50 million Americans who cope daily with pain, often disabling. Many suffer needlessly and lead unnecessarily restricted lives because they do not get the relief they need.

Chronic pain takes over lives. Reiter calls pain "an adversary I must continually fight in order to function." While she has access to the strong medications she needs to cope, her pain never goes away completely. For 19 years, it has ruled her daily activities. "I'm in extreme pain when I wake up," she says. "If I have to be somewhere at 9 a.m., I have to get up at 5:30 or 6, take medication, rest while the medication takes effect, then get up again and shower."

Pain is a key factor in her relations with others. "I have to be careful," she says. "Talking about it with friends carries the danger of burdening the friendship. People feel badly when you're in pain. It can become a barrier.

"It's an enormous part of who and what I am," she adds. "That bothers me. I don't want to be `the person in pain.' I don't want to be pitied."

Hal E. Garner Jr., 41, of North Logan, Utah, was a promising player with the NFL's Buffalo Bills when a spinal injury ended his football career and propelled him into the world of a chronic-pain patient. Garner lived with severe pain for 12 years before he found effective therapy. He felt pressure to adopt a stoic posture. "Everyone gets sick of hearing how much you hurt," he says. "I had to paint a smile on my face every day."

He felt harshly judged: "People think you're making it up. They want you to see a psychiatrist. But this pain is real. It comes from rods in my back and scar tissue from surgeries pressing on nerves. It was hard to sleep, to get out of bed in the morning, go to work day to day and make a living---and keep everybody happy."

Today, Garner has a pump that delivers strong medication directly into his spine. A specialist helps him to manage his pain. "Now," he says, "I don't have to put on a smile or make excuses for myself."

Why pain patients don't get better treatment. Ideally, alleviating chronic pain should be a straightforward exercise of human kindness. Instead, "pain management" has become a battleground of conflicting agendas and priorities among doctors, patient advocates, government regulators and insurance companies.

A key issue is the widespread fear of addiction.

"Hooked" on painkillers? The medications that help Reiter and Garner are called opioid analgesics. Related to morphine, one of the strongest painkillers known, they are generally safe and effective. They're not for everyone, but for many, these drugs are a godsend. (Treatments such as hypnosis, biofeedback, surgery, physical therapy and acupuncture also can help.)

Yet not everyone who needs these drugs gets them. Many doctors are reluctant to prescribe opioids for fear that their patients will become addicts. Addiction is a serious disease with psychological, social and probably genetic roots. Dependence is an unavoidable side-effect. While pain patients may become physically dependent on medications, research shows that addiction is uncommon unless there is a previous history of substance abuse. The pain patient depends on the drug the way a diabetic depends on insulin. Misunderstanding this difference creates problems.

"When you tell somebody you take an opioid," says Reiter, "they look at you like, `Oh, my goodness, she's going to become addicted!' But I don't use drugs; I take medication. I'm not addicted; I'm dependent. And I monitor myself carefully."

"I ran into prejudices at every job I went to," says Garner. "I was seen as addicted to medications."

Some doctors withhold or under prescribe opioid painkillers because they are wary of scrutiny by state medical boards (some states set dosage limits for these drugs) and the Drug Enforcement Agency. In the climate created by the "war on drugs," a person reporting pain whose cause cannot be determined may be suspected of seeking a prescription for a controlled substance.

"They thought I was faking pain." Mathew Rudes, 17, of Northridge, Calif., was born with severe infantile Marfan syndrome, an often lethal connective-tissue disease that also affects the heart, blood vessels, eyes and skin. Multiple surgeries and other procedures saved his life, but Rudes had recurrent episodes of severe spinal pain that doctors could not diagnose. Many didn't believe it was real. "They'd do scans, X-rays and other tests, and they'd come up negative," Rudes says. "The doctors thought I was faking it. That made me really angry."

He is now under the care of a pain specialist, who prescribes effective medications and monitors his dosage weekly. Mathew is an 11th-grade honor student. "I have a 4.0 grade average," he says.

The cost of relief. Finding the best treatment often requires a trial-and-error process. Few treatments are cheap, and health plans may put caps on how much they will pay and for how long. A patient who needs a costly medication for a lifetime may be covered for only six months.

What needs to change. If chronic pain is to be defeated, say pain-care professionals, people need to understand that pain can have wide-ranging effects and hidden causes. We need to be clear on the difference between addiction and dependence. The romance with stoicism must go. Above all, more compassion is needed---from doctors, legislators, insurers and everyone else---so that chronic pain receives as much attention as drug abuse. We must stop judging sufferers and see pain for what it is: a part of life. It could happen to any of us.

How (And How Not) To Act With A Person In Chronic Pain

People with chronic pain want to know that you believe them and that you care. Here are some guidelines for dealing with someone in pain:

* DO NOT judge the person. Pain is not a sign of weakness or bad character.

* DO acknowledge the person's suffering.

* DO NOT pretend that you don't notice the struggle.

* DO act with respect.

* DO NOT dwell on the future. Pain forces people to live in the present, so make the present pleasant. Be upbeat.

* DO offer assistance. Ask if there is anything you can do: run an errand, take him or her to a doctor, adjust a pillow, make a call.

* DO NOT dwell on your own problems. Talk about light subjects: a book you've read, a movie you want to see.

* DO treat the person the way you would like him or her to treat you.

Arthur Rosenfeld's new book, "The Truth About Chronic Pain" (Basic Books), explores the challenges of facing, understanding and overcoming persistent pain.

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© 2003, S.D. Hunter