Rhonda Enzinna has discovered it’s nice to be in a room where people accept that her hurting is real.
She knows that tepid “hmm” that clinicians and others express when Enzinna, 61, of Kansas City, tells them she has lived with pain since she was a girl.
In chilly or windy weather, and when she touches an ice cube, her neck, limbs and joints feel as if they’re on fire.
Two years ago, Enzinna joined an upstart group that believed her, fervently. Most of its members suffered, too, and all were fed up with a health care network that commonly regarded chronic pain with suspicion.
“There’s this belief that certain people exaggerate their pain,” said Enzinna. As a result, doctors sometimes would prescribe her antidepressants but nothing to combat the physical plight.
Moving from quiet isolation into advocacy, Enzinna and dozens of others who live with chronic pain meet monthly to help chart a mission called Relieving Pain in Kansas City. Some experts say the citizens group is laying a foundation for what might become a national movement.
For some of the members, just showing up at the Fairway meeting site is an achievement.
Traveling miles from home can be excruciating. Sitting for an hour or more to discuss strategies for raising awareness isn’t easy.
“Groups from all over the country have contacted us because we’ve been consistently getting together since June 2013,” said Cindy Leyland of the Center for Practical Bioethics, which sponsors the group.
Don’t call them sufferers. Don’t call them patients. The center calls the group members “citizen leaders,” or simply “people who live with chronic pain.”
The goal of the nonprofit, which is partially financed by the pharmaceutical industry, is to explore ways they can share information, expand their treatment options and help change societal attitudes about chronic pain.
Around them rages a national debate over addictive painkillers and the treatment of ailments that are difficult to detect through medical tests.
The leading voices tend to belong to physicians, law enforcement, drug manufacturers and their detractors, or insurance providers that are reluctant to fund therapies that have not proven to help.
Sometimes drowned out of the conversation are the estimated 70 million to 100 million Americans who endure pain, including more than 40,000 in the Kansas City area.
“The drug problem is controlling the narrative, and that’s sad,” said Lynn R. Webster, a past president of the American Academy of Pain Medicine who spoke last month to advocates of the pain project. “Physicians increasingly don’t want to treat chronic-pain patients. They think they’re druggies.”
Partly because of the stigma attached to those with chronic pain, it’s rare for them to band together in an organized and out-front fashion, said Webster. He has written a new book profiling pain patients and is preparing a PBS documentary.
“This group in Kansas City might prove to be a national seed for a broad social movement,” he said. “I don’t know of anywhere in the country where there’s this groundswell of regular people trying to move these issues forward.”
“We need these people to be telling their stories,” Filer said. “Physicians have had such pushback on (aggressive pain treatment) from a medical and legal standpoint, I think we’ve lost the voice of the patient.”
Maladies differ and therapies vary for members of the citizens group.
They’re of all ages, sizes and education levels, sharing little in common except for an all-consuming struggle with pain. That often means sleepless nights, an inability to work full time, mental anguish and detachment from friends.
Many get by on meager incomes and were referred to the pain group by public-health clinicians.
Enzinna’s condition has a name — cold urticaria, a rare allergy disorder she inherited from her mother’s side. Prescribed antihistamines help.
Through her involvement with the citizens group, Enzinna became certified to teach sessions on self-managing chronic disease at senior care homes.
John Bell, 47, has endured sickle cell disease since his youth. He recently worked with his East Side neighborhood alliance, the Key Coalition, to organize a walk/run benefiting sickle cell research.
Kalind Perry, 30, was an emergency medical technician until her life was rerouted by crippling headaches after a brain injury she sustained working in an ambulance. She and another member of the pain group this year traveled to Wichita to speak to 300 physicians at a convention.
“I told them I was suicidal, and the whole room went silent,” she said. “I talked about how you isolate. You don’t do the things you used to enjoy. You get in this dark hole only to dig yourself in deeper.
“I think the doctors were listening.”
They were, said Leyland, the coordinator of the pain group. “Oh, she had them,” Leyland said.
Still, practitioners have reason to address pain patients with caution.
Years of scandal over “pill mills,” rising prescription-drug abuse and deaths by overdose have prompted federal crackdowns on those dealing the most addictive painkillers, known as opioids.
Group member Bell said he understood the need for clinicians to be wary of patients who complain of chronic pain, especially those who visit multiple doctors.
Twenty years ago, “I know there were patients jumping all around just looking for drugs,” said Bell, who uses prescribed opioids.
Today, prescription-drug monitoring is improved, urine testing is routine and physicians are on guard. When Bell meets a new doctor at Truman Medical Center, “you have to be real careful with what you say and how you present yourself,” he said.
“If they don’t know me and don’t know my background, at first they’ll treat me like I’m one of those bad patients.”
Bell is African-American, a demographic that studies have shown is less likely than whites to be prescribed pain-killing opioids in emergency room visits.
Female pain patients also may face more difficulties than men in convincing male doctors to aggressively treat their suffering, some research suggests.
Ask the women, and the feeling is universal. At a “Women in Pain” conference last year in Los Angeles, 90 percent of 2,400 women with chronic pain said in an unscientific poll that they felt the health care system discriminated against female patients.
In the 1990s, when the medical thinking was to dispense more narcotics to conquer pain, one study of cancer outpatients determined that women were five times more likely than men to be undertreated for the discomfort they reported.
41Percentage of women patients with pain who switched to new physicians, according to a study citing “difficulties in comunication”
27Percentage of male patients changing doctors in the same study
“A lot of studies show that with women patients, doctors are more inclined to think the pain is in their minds and it’s driven by emotion,” said Tamara A. Baker, a University of Kansas psychologist. “Women have to go above and beyond what male patients go through to be believed and to get adequate treatment.”
She added: “But you can’t just place the blame on the physician. It’s a two-way street.”
Baker said pain patients “will bring with them their own perceptions and assumptions about doctors, based on past experience. An open communication between patient and physician is critical, and it has to be honest.”
Perry, of Independence, said she harbored stereotypes of pain sufferers when she worked as an emergency medical technician.
Too often, the ambulance was racing in the middle of the night to people complaining of bad toothaches and demanding painkillers, Perry said.
She thought most were fakers. Some may have been, though Perry said she now believes her suspicions were overly broad.
“I’m sorry I ever doubted anyone in pain,” she said.
Perry last weekattended a forum that brought about 40 pain sufferers together with physicians, psychologists, yoga instructors and researchers of sleep, diet and anxiety.
A few minutes into a talk about traditional medical methods for treating pain, he encouraged the audience to jump in anytime with questions and comments.
One after another, people jumped in. LeMaster couldn’t finish his presentation.
“If I don’t have cancer, I can’t get certain pain medications,” one said.
LeMaster nodded and more hands went up.
“I’ve got thousands of dollars in bills from people who didn’t know what they’re doing,” said another.
Followed by, “I don’t need meds. I need help.”
A 15-minute doctor’s appointment doesn’t come close to providing that help, the group agreed.
One person there, Ken Babb, wore thick mittens to ward off searing sensations that the slightest air currents can trigger. The Hutchinson, Kan., man lamented that insurance companies dictate most of the decisions on his treatment.
A former IBM Corp. executive, Babb was injured during a 2012 trip to China. In a subway his right leg got wedged between an idle train and the platform.
The bones in his leg would heal up. But the accident left Babb with a full-bodied, neurological condition called complex regional pain syndrome.
It controls all aspects of his life, including his attire. For three years, Babb has worn shorts rather than irritating trousers, even in winter.
“But I’ll survive,” Babb said. “I have a fantastic family and support system that a lot of people with pain don’t have.”
If some people who live in pain lacked a support system before becoming citizen leaders, they have it now.
Enzinna learned from her fellow group members how to better communicate with doctors.
Before, she would downplay her agony, thinking that would make her complaints more credible. Now she does her best to be precise — explaining when and where on her body she will feel something scorching her like hot grease.
And she listens more to her doctor. “I no longer go in expecting to be cured,” she said.
For Perry, advocating is helping her heal.
“I’m a completely different person than I was before joining this group,” she said.
A frequent speaker, Perry works closely with her mother Angela Perry, a non-sufferer, on other causes related to chronic pain and brain injury.
“I’m now involved in many more activities outside the home,” she said. “A huge part of living with this is mental attitude. It’s the key to everything.
“You have to be positive, keep fighting and not give up.”