In the healthcare world, as in the world in general, it takes all kinds. There are patients dedicated to self-care and those who knowingly self-destruct. There are practitioners and administrators who go out of their way to help people and those who actively abuse their power. Add to this melee the entire spectrum of personalities, expectations, and communication skills, not to mention an entrenched HMO system, and what ensues is something akin to a medical circus.
Somewhere in this chaos floats a set of charming, intelligent, and empowered chronic pain patients who have found themselves in a trap: When they have spoken up about their health care needs and treatment plans, they have been labeled as “crazy” or “difficult” patients – effectively undermining medical response to their cases. When they have not spoken up, they have fallen victim to misdiagnoses, improper medication, and active or passive forms of medical negligence.
Proactive by nature, they have bounced from doctor to doctor, only to find themselves increasingly exasperated and desperate for proper treatment. Meanwhile, life as they know it has come crashing down, leaving in its wake the physical, emotional, and financial wreckage of chronic and debilitating pain. Months and years into their quest, these patients have become too tired and sick to fight. They have thrown their hands up in despair. They have become complacent.
Fall from Grace
Jessica Gilmore* is a poster child for the empowered patient who, over time, has fallen prey to The Good Patient Syndrome. A decade ago, Gilmore was living an enviable life: She was an up-and-coming stock broker, who left a prestigious job at a leading finance company, to power three startups – one of which she sold to Excite and another of which blossomed from 20 initial employees to several thousand worldwide. She jogged or biked each day; she practiced yoga and meditation regularly; and she was happily married.
Suddenly in 2001, Gilmore was plagued by severe fatigue, extreme weight loss, and difficulty eating. One day, she collapsed in her office. Despite tests indicating that her body was shooting out too much cortisol, doctors at a prestigious medical facility diagnosed Gilmore with severe depression and began prescribing what Gilmore describes as a “battery axe” of psychiatric drugs – putting her on 22 prescriptions simultaneously.
By the time Gilmore was properly diagnosed with adrenal exhaustion, nary a trace of cortisol in her system, it was too late. The drugs had catapulted Gilmore into a vicious cycle, and months later, Gilmore was locked up in psychiatric wards, on and off for about a year — during which time her husband left her, and her life otherwise unraveled.
“I kept telling my doctor, ‘There is something else going on,’ Gilmore recalls. “She told me I was just in denial. I pushed back, telling her, ‘No, it is not denial. I wish someone would listen to me and work with me on why I’m not feeling well. I am an athlete. I know my body. There is something else going on.’ It was just insane.”
A Question of Trust
While Gilmore’s parents collaborated with doctors on admitting their daughter to a psych ward, Gilmore does not blame them. “My poor parents didn’t know what to do at this point, so they were listening to the doctors,” Gilmore explains. “They were expecting to trust the doctors.”
“Our conditioning has taught us that doctors are the ultimate authority figure,” explains David Simon, MD – CEO, medical director, and co-founder of the Chopra Center for Wellbeing. This conditioning, Simon elaborates, begins when we are children. We constantly look to our parents for information, boundary setting, and nurturing. But when our parents take us to a doctor, they surrender their authority to that of the doctor. “So the conditioning runs very deep,” Simon notes.
We trust doctors the same way we trust teachers and police officers, agrees Gilmore. “But when I was in the psych institute, I realized that I can’t trust doctors. I knew I wasn’t crazy, and I was trying to ask for help, but nobody was listening. They were not just the gatekeepers to my health; they were the gatekeepers to that locked door. I was petrified. I came to understand that doctors did not necessarily have my best interest at heart. These doctors were not taking care of my wellbeing. If they were, they would take even five minutes to sit down and listen to what I had to say.”
Patients initially expect healthcare practitioners “to respect and believe them,” says Bonnie Cardenas, PT, director of Cardenas Physical Therapy. “Unfortunately this does not always happen.” When that sacred trust is broken, as is disproportionately so in cases of chronic illness, patients come to feel frightened, powerless, and — without medical training — at a loss of what to do. Some patients give up, with consequences that can be anywhere from life-altering to fatal. Others, like Gilmore, get busy:
They learn the nuts and bolts of their disease and find reputable sources of information for treatment options. They familiarize themselves with pharmacology and intelligently review their prescribed medications. They become adept at summarizing their case history and communicating with practitioners clearly, succinctly, and politely. When doctors are unresponsive or disrespectful, they leave and find other practitioners.
Empowered patients, however, are not always welcome ones, and patients are preceded by the reputation they gain in their charts, which get passed from doctor to doctor. “Doctors give orders, and if patients do not follow those orders, the patients are forever branded as non-compliant, perhaps even defiant,” says Shannon Stocker, M.D., who herself suffers from Complex Regional Pain Syndrome.
“When this label is entered into a patient’s chart once, it will make every visit thereafter one in which the physician goes into the meeting with preconceived notions – which often times severely affects the treatment of the patient, leading to misdiagnoses.”
“There are a lot of doctors who are very smug about what they think they know,” concurs James Dillard, M.D., D.C., C.Ac – a chronic pain specialist and author of The Chronic Pain Solution. “They expect people to just follow what they are saying, because they are the ones who went to medical school.” Doctors have been trained to think that they are authorities, given their scientific background and, therefore, “superior knowledge,” adds Cardenas. “Disagreement…is not to be tolerated.”
And yet, healthcare experts agree, it is critical for doctors to listen carefully to their patients and take their complaints seriously. Who, after all, knows the body of a chronically ill patient better than that patient?
“I have been treated like an overzealous hypochondriac…until the tests kept turning up positive,” shares Bridgette Donahue, a chronic pain patient and former news reporter in Michigan. “Too many of us are suffering because of disbelief and lack of understanding and support from the medical community.”
For numerous chronic pain patients, test results do not serve as the lynchpin for garnering a doctor’s attention and respect. “Many chronic pain conditions cannot be diagnosed at the lab or via imaging,” says Charalambos Kesta, producer of the Chronic Pain Educational Documentary Series. “Doctors today assess their patients through highly-evolved technological tools. In other words, ‘If I can’t see it, it does not exist.’ In addition, many doctors have very little training about, understanding of, or interest in chronic pain conditions.”
Exhaustion and Fear lead to Resignation
“When you have to be hyper-vigilant and watch everything they’re putting into you, because they do mess up, and they do give you the wrong medication, or they don’t return your call, or they don’t get you in to be seen when you have a severe infection, it’s just exhausting,” says Gilmore. Add to this exhaustion the overwhelming demands and limited resources that accompany life with chronic and debilitating pain, and even the savviest of patients wear down over time.
“I went through hell, as doctor after doctor failed to diagnose me — accusing me of faking my symptoms, then of having psychogenic pain and symptoms,” recalls Yvette Thomas, a chronic pain patient with Ehlers-Danlos Syndrome. “When I refused to see a psychiatrist, my then-doctor discharged me abruptly. I’ll never forget the fear and the terror of those days.
“Now I am properly diagnosed and safely in the care of one of the few rheumatologists familiar with my disease. So I want to be ‘good.’ I don’t want to complain of the pain that saps my energy every second of the day. I don’t want to tell her that the Lidoderm patches aren’t enough and that the anti-inflammatory medication isn’t enough.
“’You tool, you idiot, you pushover,’ I think to myself. It’s like an abusive relationship. I just don’t want her to leave me. I’m afraid I’ll never find anyone as good as her, because it seems nobody else knows anything about this damned disease. Maybe if I’m good and wait and do things on her timeline, instead of mine, she will reward me with pain drugs that work.”
This past March, when Gilmore was admitted to the hospital for excruciating bladder pain, only to be told that she needed psychiatric counseling, she simply broke down and cried. Only at the nth hour did a doctor even bother to look at the results of her urinary culture. As it turned out, Gilmore had a raging chronic bladder infection, caused by eColi bacteria and compounded by interstitial cystisis – a chronic painful bladder disease.
“They didn’t do their job,” Gilmore says. “It’s easier to label me as crazy and send in a psychiatrist.
“All my energy, which should be going into me resting and healing, instead goes into micromanaging my care — finding out if doctors performed the right tests and if they checked those tests for the results. I have to play doctor when I am at my most vulnerable, and it’s just unbelievable. When I go into the hospital, I should know that the doctor has my back. All I should have to do is lie in that bed and get better.”
* Name changed at the request of the interviewee