I’d had the slowly increasing pain for 4 days. Both of us being nurses, my friend said, “Ah ha! Eight days in a wet bathing suit. I bet you have a urinary tract infection!” “Maybe,” I replied. 

I waited one more day — on vacation, hoping this mystery pain would just go away. I left the beloved sunshine and good company only long enough that day to get a gallon of cranberry juice. By the end of the next day, I could hardly move. Another friend took me from our lovely beach spot to a local ER.

After 1/2 hour of waiting inside the ER, this friend, who had an important position in a prestigious college, told me they had kept us waiting long enough and that she would take care of matters. She demanded, in a loud and commanding voice, that I be seen immediately.

She put up such a fuss, the staff merely became angry with her, and by extension, me too. They did not move any more quickly or see me any sooner. I, being a nurse, felt I had a lot of making up to do. The situation was all the more embarrassing. 

So I decided to be the ultimate good patient. Everything they did was “fine.” I felt “fine.” Except, that is, for the excruciating pain in my gut.

They did the gamut of tests on me, even admitted me overnight. The night nurse came to see me. “How is your pain?” she asked. “Well, it’s about a 7-8/10 but still, I’m fine,” I replied. In the morning, a new doctor came in and sat down in front of me, chuckling as he said, “You’re constipated!”

I wanted to rip his head off and scream, “I know what constipation feels like! I am not constipated!” But instead I said, “That is fine. I’ll go home now.” ”How is your pain?” the doctor asked. ”It is still pretty bad,” I replied. “Can you get a wheelchair for me to leave in?” “Oh sure we can,” he answered. “You’re fine though.”

When I came home, the doctors still couldn’t seem to find the source of my pain. My own primary MD was skeptical. Being a nurse, I was so eager to please. I did not want to disagree with my doctor. I just kept telling her how much pain I was in: Unrelenting, unremitting abdominal pain. She did not believe me.

I was so angry at her for not believing me and at so angry at myself for holding this deferential thing (“I promise I’ll be good”) between us, even at my own expense. My doctor even admitted I was previously someone she “never heard from” and suddenly I was turning into a “nervous wreck.” I’d say I was pretty calm for someone in as much pain as I.

It was the mid 1990s, and in those days it was fairly common for clinics and emergency rooms to run one preliminary test and let it go if it was negative, so as to save money. And so my clinic did what was called a urine dip test. Not finding a positive result, they discarded the remaining urine sample and didn’t go to the next step. 

The abdominal pain became so horrific and debilitating over the next six weeks that I could neither work nor sleep properly. It was not long before I was back at the doctor’s office, crying in pain again.

I remember describing the pain to my dad. I told him that I felt as if there were a jack hammer inside me everyday, all day, going on and on. I was losing weight; my white blood cell count was elevated; and I began having fevers. But they still didn’t think I was sick. A few of the providers I saw asked me if I was seeing a therapist.

Then one weekend, again in intolerable pain, I went to the doctor’s office, and this nurse practitioner was working. She said she wanted to review my record, to see if they could possibly have missed anything. She then saw the glaring problem: They had apparently tested me for urinary tract infections (UTIs) through the use of ultrasounds, a CAT Scan, intravenous pyelogram (IVP), and many blood tests, but they had failed to do a culture and sensitivity test.

The nurse put me on antibiotics, presuming I had a bad UTI. She sent me home and ran the culture and sensitivity test. Two days later, the test came back positive with fulminant multiple bacteria. The nurse called me on the phone with  the “good” news. She kept apologizing, but to me it was wonderful news.

“I didn’t know you could grow three bacteria at a time in the bladder,” she said, “As a matter of fact, there is one bacteria I have never, even seen in urine. I called an Infectious Disease doctor, who said it is very unusual, but understandable, given how long you have had this infection. You have been suffering so long with this. I can’t believe all you have been through!” 

I asked the nurse how it was possible that nobody before her had found it. That’s when she explained to me the money-saving policy when it came to the tests. All those weeks I had been asking repeatedly, “Was the culture and sensitivity test negative?”

As it turned out, the doctors simply were not performing the tests that would have found the infection. They must have saved about $200.00. But the cost became far greater in the end, for them as well as form me, when they had to progress to prohibitive testing.

So in foregoing this far simpler, less expensive test, through which the doctors could have found the problem much sooner and saved us all a lot of heart ache and misery, the HMO didn’t save a penny. I was so angry with the HMO policy and my doctor.  I called administration. I wrote letters.

I got one letter of apology, but not one human being (beside the nurse who found the reason for my pain) ever apologized to me. Not even my primary MD. She insisted that the UTI was something that was a recent development.  

I tried changing doctors within the HMO. When I went in for my first appointment with the new doctor, I was in-between seeing my own patients as a Visiting Nurse. I decided that I might as well get some work done while waiting. I had brought a stack of my patients’ records — about 1.5 feet high – and got busy.

As I was led to the exam room, I noticed my old doctor in the hallway, talking to my new doctor. The new doctor then came into the room, stopped at the doorway, and laughed snidely. “I see you have brought all your medical records with you,” she said. ”Well, no, these are my patient records, I’m a visiting nurse. While I was waiting I…” 

“Yeah, right,” she answered. “So what are you here for today?” It went downhill from there. and I changed my insurance plan within the next month.

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Loolwa Khazzoom: What is the cultural backdrop of the practitioner-patient relationship?

Beth Darnall, PhD: The patient-provider relationship is dynamic.  It depends on the expectations and resources both people bring to the table.  For instance, a patient may be passive about their medical care and be cure-focused.  A provider may enable this attitude by over-focusing on pain medication and doing little to encourage and connect the patient with resources that would promote active rehabilitation. 

Historically, the culture has promoted the view of doctors as being authority figures and the people who “fix” health problems.  With chronic pain, reclaiming quality of life involves a large focus on modifying lifestyle choices, focusing on activity, stress management, and the like.  Rarely is there an external “cure” and it is unrealistic for patients to expect one—it sets them up to experience a sense of failure. 

If as providers we can steer patients in the direction of learning to acquire skills and tools that allow them to help themselves, we can do a great service.  Medication may be one part of the equation, but it is just that—one part. It’s not a cure-all.

LK: How might various physical and symbolic factors play into the practitioner-patient dynamic?

BD: The power dynamic can be formidable.  Add into the equation gender roles:  Women patients may struggle to be assertive with male authority figures and thus be less likely to advocate for themselves.  On the flip side, some research has shown that physicians of both genders may be less likely to take women’s symptoms seriously and thus their medical treatment may be compromised.   Male and female providers alike bear a responsibility to be aware of their own biases. 

Some of the physical and symbolic factors that influence the practitioner/patient dynamic (e.g., the white coat) may be necessary in a medical setting for various reasons.  Professional providers are often more formally dressed than the patient, and professional dress is appropriate in this context.  Regardless of the dress, a medical provider may convey compassion, warmth, intent listening, and a desire to help the patient.  These are the most important qualities to bring to the provider-patient dynamic. 

LK: What do you see as the difference in dynamics between being an occasional patient and a patient with a chronic health condition, like chronic pain?

BD: Chronic pain is often stigmatized, and it presents several unique challenges. For instance, opioid medications may lead to tolerance, dependence, and hyperalgesia (heightened pain).  While these are medical consequences from prescribed medication, they are also the same consequences one experiences as a result of medication misuse.  The iatrogenic effects from opioids may be difficult for the provider to tease apart from misuse behaviors, and this can lead to strained patient-provider relations.

LK: What is the potential consequence of being labeled a “difficult patient”?

BD: Certainly, some people are unwilling to follow recommendations and may over-rely on medication to treat their pain. This person may be viewed as difficult because they are not participating in their care. However, some people may try many things in an effort to help themselves and are simply not successful in gaining relief. The provider must remain clear that lack of success with treatment does not necessarily mean “difficult.” 

Certainly, the patient may present a difficult medical case, but that needs to be distinguished from being a “difficult patient.” It’s natural for providers to feel helpless at times, given that none of the options may be working. It’s important for the provider to recognize their own emotional experience of frustration or helplessness and avoid projecting that onto the patient.  Again, as providers, we bear a huge responsibility to be aware of—and take responsibility for—our own emotional experience.

LK: What do feel healthcare practitioners need to do, to facilitate an environment of safety, invitation, and partnership?

BD: Providers need to be willing to take time to listen to the patient and ensure that the patient feels well-received and -validated.  Our nonverbal communication plays a large role in the dynamic. Providers should make eye contact throughout the initial meeting.  Give patients enough time to complete their thought. Ask if there is anything else they would like to add. If providers are obviously hurried in their approach to the patient, the patient will not feel at ease and will be less likely to communicate effectively.

LK: What tips do you have for a patient, in terms of communicating and asserting their needs?

BD: Be clear on how much time you will have with your doctor.  Ask for an extended visit if possible, so that both you and your provider will not be rushed.

In advance of your appointment, write down everything you want to address with your provider.  Come to the appointment with your list in hand, and let your doctor/provider know that you have the list.  Since you already know how much time you will have, prioritize which points are the most important to address that day.

Keep in mind that it is essential for you to feel comfortable with your doctor or provider.  If you do not believe your provider is a good fit for you, look for another one.  Ask for recommendations from other providers you may be seeing or from other patients who have a similar medical condition.

LK: What advice do you have in terms of determining whether a practitioner is safe or whether it is time to find a new one?

BD: I won’t speak to the safety issue here.  I will say that a patient is entitled to feel respected at all times.  If you do not feel respected by your doctor or provider, please consider seeking a new provider. 

LK: What are some steps a chronic pain patient can take, to maximize emotional and physical safety, as well as practitioner receptivity, when s/he may need to bounce around from specialist to specialist?

BD: If the issue is bouncing from medical specialist to specialist, consider working with a pain psychologist to help establish continuity, to help problem-solve the issues at hand, to understand whether the role you (as the patient) be playing in the dynamic, and to develop skills that will help minimize reliance on medical providers for pain management.

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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.

The Backlash

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

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1. Check in with them before touching them. Let them know what kind of touch you need to do and why, and see if there is anything you need to know about special sensitivities in that area. Keep in mind that in addition to being careful about the quality of touch itself, you need to be careful about how you approach the client. Past trauma may make a client tense up just knowing that a touch is coming. Hearing your extra step of care and heads-up, which seriously is a matter of maybe 30 seconds, will make a world of difference
2. Let the client know that you invite feedback about the quality of touch – if the pressure is to firm or the touch is too quick, for example.
3. Move extra slowly and gently, as if you are working with a frail elderly person, even if that client is young and looks strong and healthy. Remember that the nervous system of someone with chronic pain and hypersensitivity can be shot. Any jerking or jarring motions, or any trigger of the fight-or-flight response, can exacerbate pain – not just in the moment, but for days to come. Begin by gently laying your hands on top of the patient’s skin, then if necessary for the examination, very slowly and softly increasing pressure – giving the client time to adjust and inform you if the pressure becomes too much.
4. Check in again, as you work with the client, and especially as you increase pressure. The combination of past healthcare practitioner invalidation and general social conditioning may make a client afraid of speaking up. Your encouragement can help the client overcome that fear hurdle and communicate honestly, making the examination effective.
5. Question whether it is truly necessary to poke and prod around a client’s body, to determine pain zones. Perhaps this information is already in the client’s chart somewhere. Or perhaps the client can inform you of these pain zones herself. If you do determine, together, that it is important for you to test out the comfortable and painful areas on a client’s body, do so with rigorous attention to the safety steps outlined above.

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1. Pain is often invisible.

“Someone with diabetes may be viewed in the context of how they comply with instructions, but the professional will believe their medical story and complaints,” explains Bonnie Cardenas, PT, director of Cardenas Physical Therapy. “To the contrary, someone with chronic pain, for which there is no obvious etiology, will be viewed very differently…The patient’s veracity and emotional state may be suspect.”  

2. Pain patients are often stigmatized.

“So many pain patients are listed as ‘head cases,’ ‘train wrecks,’ ‘drug seekers,’ and ‘psych cases’ before they are ever even seen,” reveals Shannon Stocker, M.D., who herself suffers from Complex Regional Pain Syndrome.  “Especially with regard to women in chronic pain, unless they are exhibiting physiological symptoms that can be measured and proven, ‘pain’ is equated too often with ‘psychosomatic.’  It makes the ability to achieve a mutually-respectful relationship nearly impossible.  And if a physician does not believe or trust a patient, effective treatment is obviously not going be given, and the patient will continue to suffer.”

3. The response to pain medication is often misunderstood.
Opioid medications may lead to tolerance, dependence, and heightened pain, says Beth Darnell, PhD — Assistant Professor in the Department of Anesthesiology & Perioperative Medicine at Oregon Health & Science University.  “While these are medical consequences from prescribed medication, they are also the same consequences one experiences as a result of medication misuse,” she says. “The iatrogenic effects from opioids may be difficult for the provider to tease apart from misuse behaviors, and this can lead to strained patient-provider relations.”

4. Pain patients may have trouble functioning properly.           

“My command of the English language is normally strong,” says Bridgette Donahue, a chronic pain patient and former news reporter in Michigan, “however, pain chips away at my ability to communicate.”

5. Managed care does not allow adequate time for complex cases.

Given the current sickness of our healthcare, says David Simon, MD – CEO, medical director, and co-founder of the Chopra Center for Wellbeing, doctors try to fit patients into the system, instead of fitting the system around patients. In addition, he continues, “Most modern physicians are facing time pressure. If they don’t see a certain number of patients in an hour and bill a certain number of visits, then they cannot make ends meet. So any time there is someone who is more challenging for the typical physician practice, that person gets categorized as a difficult patient.”

6. Difficult pain cases are confused with difficult patients.

“Certainly, some people are unwilling to follow recommendations and may over-rely on medication to treat their pain,” says Darnell. “However, some people may try many things in an effort to help themselves and simply not be successful in gaining relief.”  Whether from a sense of helplessness or ego bruising, experts muse, providers nonetheless may blame patients for the failure of treatment.

7. Cultural symbols enforce deference to doctors.

The power difference between doctor and patient (white coat, sterile office, one person lying down and one hovering over, one being called “Dr. So-and-So,” the other being called by a first name) “can be formidable,” says Darnell. The patient is “in a subordinate, almost inferior role,” agrees Stocker, making otherwise assertive individuals act deferential around doctors. “The sad thing is that society has fed into this dynamic,” she says.

8. Chronically ill patients have disease fatigue.
Given the exhaustion involved in living with chronic illness and responding to its devastating effect on one’s life, it can be overwhelming to even think about negotiating with a current doctor or starting over with a new one. “People are sick and tired of being sick and tired,” empathizes James Dillard, M.D., D.C., C.Ac – a chronic pain specialist and author of The Chronic Pain Solution. “They just want a break.” 

9. Doctors follow in each other’s footsteps.
Every time a patient sees a new doctor, that doctor will request charts from previous practitioners. “Once a practitioner reads or hears that someone is a ‘difficult patient,’ I believe the practitioner inevitably cannot wait for the appointment to be over,” says Stocker. “The practitioner does not believe a word that comes out of the patient’s mouth, so the practitioner does not listen. The practitioner also does not believe that the patient will listen, so the practitioner does not want to invest time and energy into the patient. The patient typically does not listen, because the s/he does not feel heard by the practitioner. And so the cycle continues, with the patient’s well-being getting lost somewhere along the way.”

10. The devil we know seems better than the devil we don’t.

“A lot of people don’t understand what it’s like to be taken care of by a good doctor who really is there for patients,” says Dillard. “They stick with a miserable status quo, because they just don’t know any better…Why do women stay in abusive relationships and bad marriages? They feel powerless. They feel like they don’t have any other options. It’s the same psychology. It’s the Stockholm Syndrome.”

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Chronic Fatigue Syndrome, Migraines, Osteoarthritis, Venous Insufficiency in my legs from a Deep Vein Thrombosis (thanks to the Pill when I was 21), Factor V Leiden (thrombophillia), Fibromyalgia, and I’ll be tested shortly for Ehlers-Danlos Syndrome — which would explain the extreme hypermobility and pain in the joints throughout my body.

The fact I am an articulate and educated female often puts me at odds with the usually male doctors, when I point out an issue or problem I am facing.  

I’m an analytical person who researches things before I bring them up, because I don’t want to waste my time or theirs.  I’m the one who in the late 1990s suggested to my doctor that I be tested for a blood clotting disorder, which it turned out I had.

And just a couple of months ago, I discovered the existence of Ehlers Danlos Syndrome, because I have a friend who has it; and she thinks I may have it, based on my symptoms.  I likely do have it, according to several doctors I’ve already seen, but won’t know for sure until I go to the genetics clinic. 

Trust me, I don’t relish being right about having more things wrong with me, but I do know my body.  The angst I feel has been seared in my memory by how hard I’ve had to work to be believed.  Like I have nothing better to do than imagine exotic troubles in my own person.  

I’ve been treated like an overzealous hypochondriac at times, by some of the physicians I’ve encountered, until the tests kept turning up positive for the very disorders they invariably assured me were usually rare.  And, on a comic note,  I’ve had more than one doctor admit to me I have so many health problems going on, they don’t know where to start.  

One specialist, whom I saw for the first time recently, sat down, looked me in the eyes and asked me to help him figure out what my main issue was.  I sat there thinking, yikes, what am I, a doctor?

In all fairness I don’t doubt they deal with more than their share of patients wrongly suspecting illnesses where there are none, but in my case, trust me, I’d love to be wrong.

So am I a “good patient”?  The fact I’ve never once raised my voice or condemned these practitioners for their lack of insight (not to their face, anyway), but rather meekly kept trying to persuade them — sometimes through repeated visits – leads me to argue, yes, I’ve been a very good girl.  I’ve gor my share of co-pay receipts to prove it.

Now, where’s my medal for being so concilliatory?  I hope I’m not allergic to it.

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I have found that it is often more about the instructor or practitioner than it is about the method. Those who have been most helpful in my healing path have all possessed the following qualities, no matter what their practice:

1. They have been deeply compassionate, with big hearts.
2. They have been creative, intuitive, and flexible — adapting their methods to my particular needs, with no ego attachment.
3. They have been non-judgmental — listening to my stories in a matter-of-fact way, making it safe for me to share and release the hell I have been through.
4. They have been open and responsive to feedback about what has not worked for me in their approach — again, with no ego attachment, but rather, with value for and appreciation of my honesty and vulnerability.’
5. They have respected my boundaries, no matter what the boundary or reason for it — matter-of-factly, no drama, no judgment.
6. They have been genuinely humble. Not the kind of humble that talks about it, but the kind of humble that just does it.
7. I have felt safe and open around them.
8. I have laughed with them at the absurdities of life. In fact, my sessions with one extraordinary massage therapist were like comedy shows half the time.

Here are a few more pointers I’ve gathered from the trenches:

1. Look out for the practitioners that leave you feeling shut down, shamed, or afraid in any way. That’s a big fat red flag with a whole lot of red glitter, flapping around on a mountaintop. You may not understand why you have those feelings, but they may be there for a very good reason. Don’t stick around to find out what it is.
2. Know that a method and how a practitioner administers the method are two completely different balls of wax. If a natural pain relief method doesn’t work for you with one practitioner, you can always try it with another and see if that changes the experience and outcome. 
3. Beware of people who promise you anything other than one more small contribution on your path of healing. The whole “this will definitely 100% be your cure-all” speech is a setup for disappointment and an empty wallet.
4. Remember: You are the boss. It’s your body and your life. Pay heed to your instincts. Don’t let anyone put you in the back seat of your own healing process.

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When we have chronic and, especially, debilitating pain, we have a certain level of desperation to get things “fixed” right away, before they get worse. I speak from experience. This whole journey into, through, and out of pain began with the collective refusal of doctors to give me the proper diagnostic tests and/or treatments necessary to respond in a timely fashion to an acute condition.

As with a spill on a rug, if you don’t take care of business right away, things fester, become hard, and get more difficult to treat. So as I became an empowered patient, I also became adamant about getting every new issue diagnosed and treated immediately.

The thing is, sometimes moving ahead right away is the best course of action, and sometimes it is not. I learned that the hard way. I was living in Israel, which at the time had about 70 chiropractors total in the whole country. Two of them had been inappropriate – one telling me to lift my shirt up (on the front side) for a back treatment, and one sticking his hand on my crotch while doing an adjustment, telling me to “relax” when my body immediately froze up.

Another was interesting – he had me hanging upside down on some contraption – but was a long drive away, and while he had some insights that were useful, the treatment was not entirely effective. Then there was the guy who was terrific in his technique but prone to being snarky and making fun of my suffering. Oh yeah, and then the last time I went, he was so busy laughing at the latest physical trauma – getting hit by a motorcycle when I was on a bicycle – that he didn’t adequatly pay attention to what I said about a certain sensitivity and ended up injuring me.

So when I landed in the office of Chiropractor #5 out of 70 in the entire country, a man who had come highly recommended, and when he was fantastically effective and compassionate for two or three sessions a week, over a two month period of time, I was fairly attached to getting treatment from him. Never mind the fact that he made a point of looking down my shirt each time I positioned myself to lie down on the table. (I ended up wearing shirts up to the neck, in blistering summer heat, and sweltering while biking to and from appointments.)

When the vibe suddenly became weird, giving me the heeby-jebbies, and when the chiropractor started forgetting not to do the adjustment I’d told him explicitly several times not to do, I continued treatment anyhow.

At the time, I was in a phone-based chronic pain support group with Jenni Prokopy of Chronicbabe.com and Paula Kamen, author of All in My Head. They both advised me to respond to that nagging feeling in my gut and not go back to this guy. “Another solution will arise elsewhere,” they asserted. “You don’t understand,” I said. “There are 70 chiropractors in the entire nation, and I’ve been to nearly 10% of them. Where will another solution come from?”

Before going to this chiropractor for another treatment, I was biking 10-18 miles roundtrip, five times a week; swimming 1-2 miles every other day; practicing yoga every morning at home and at a class three times a week; and doing regular physical therapy routines in my living room. After going to this chiropractor for one more treatment, I was barely able to walk from the couch to the bathroom, in excruciating pain pulling a sheet up to my chin, unable to open doors, and otherwise bedridden for two months. It has been over five years since that fated appointment, and I am still recovering from the damage the chiropractor did to me.

After that incident, and a number of other experiences, I came up with this phrase: “Practice the pause.” We don’t have to stop or move forward. We don’t have to make any decisions. Take a few days, a few weeks, or a few months; let things percolate; listen to our guts, bodies, and smarty-smarty friends; and see what direction the Universe takes us in next. Because if we don’t practice the pause when we need to, life as we know it may come crashing down around our feet.

If we do practice the pause, we may not get the treatment we want or need right away, and we may not even end up getting that kind of treatment at all. But we just might find ourselves on an entirely new path, with an entirely new and superior healing method or practitioner, neither of which we could have imagined would come our way. It’s the kind of things that the Universe seems to provide when we are in alignment with our souls and pursuing our true heart’s desires.

We may not see it now; we may not believe it now. And it may take years to find what we’re looking for. But sometimes a lot of things need to first happen before we can access exactly what we need. And in the meantime, going after something that doesn’t feel right just might be the worst decision we can possibly make for our health.

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But sometimes staying with a healthcare practitioner can be more than unpleasant. It can be unsafe. That practitioner may misdiagnose us, jack up our pain levels through the stress of dealing with her or him, or even physically injure us by not listening to critical information we share. As exasperating as it may feel, and as draining as it may be, it just might be worth it to look for someone else to manage our care. Here are 5 red flags that a healthcare practitioner may not be safe for you:

1. The practitioner works with you in a way that feels abrupt, gruff, or otherwise harsh.
If you not only have chronic pain but also hypersensitivity, a practitioner who yanks, grabs, or pushes your body, or who careens around the floor on her or his rolling chair, can end up injuring or reinjuring your body. Not only that, but the anxiety you may feel around this practitioner may itself jack up your pain levels.

2. The practitioner refuses to give you or makes you wait long periods for tests or access to treatment.
If you have a practitioner who is unwilling to use her or his gatekeeping abilities to get you the diagnosis and treatment you need, what good is this individual to you?

3. The practitioner uses your case history for entertainment, judgment, or some other power trip.
There is one reason, and one reason alone, that we share our painful (literally and figuratively) journeys with healthcare practitioners: We are there for clinical help. There is never any valid reason for a practitioner to use that information in any way other than just that: information. If the practitioner makes jokes out of your story, tells you that you have bad luck or bad karma, rolls her or his eyes at your emotional expression, says that you should really wear a helmet walking down the street, or makes other inappropriate remarks, it very well may be time to move on.

4. You have the heeby-jeebies, internally clutch your body, or feel humiliated when you are in the practitioner’s presence.
You may not understand why, but you don’t really need to. Your body is telling you that you do not feel safe around this individual. Listen to your gut. 

5. The practitioner is unresponsive to your communication.
If you make the effort, once or a few times, to communicate your needs – such as the neex for gentle touch, verbal sensitivity, or access to tests and treatments – and the practitioner is dismissive, patronizing, caustic, unresponsive, or otherwise uncaring and insensitive, chances are it’s impossible to salvage the relationship with this practitioner. Keep in mind that a practitioner-patient relationship is just that: a relationship. And as with all relationships, there are good ones and bad ones. Stay away from the bad ones.

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This conditioning, Simon continues, 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.

“As a physician,” he continues, ”I see people who are leading politicians, major captains of industry, and entertainers, who in almost every other context of their life have the impression that they are in control. But when they come to a doctor, they regress to a very kind of innocent, open mindset where they want to please the doctor. There’s a belief that if they surrender to the doctor, the doctor will help relieve them of their pain.”

I see this happen in the office all the time,” concurs pain specialist James Dillard, M.D., D.C., C.Ac – author of The Chronic Pain Solution. “I see people who are highly accomplished adults, who run large areas of their lives very professionally, get into my office and suddenly turn into four year olds…You see it in any illness where the patients are scared and are relying on the doctors to cure them or save their lives.”

This deferential conditioning not only is initiated when we are young but is reinforced in our adult interactions. A doctor’s opinion about a patient’s symptoms, for example, is given more credence by legal authorities, health insurance representatives, and so on than a patient’s own opinion about them.

What’s more, cultural symbols of the medical office — white coat, sterile office, one person lying down and one hovering over, one being called “Dr. So-and-So,” the other being called by a first name – feed into the power imbalance in a way that “can be formidable,” says Beth Darnell, PhD — Assistant Professor in the Department of Anesthesiology & Perioperative Medicine at Oregon Health & Science University.  

The patient is in a “subordinate, almost inferior” role, agrees Shannon Stocker, M.D., who suffers from complex regional pain syndrome (CRPS), This role easily may prompt an otherwise assertive individual to behave deferentially around doctors. “The sad thing is that society has fed into this dynamic,” Stocker says.

What’s more, Dillard adds, “There are a lot of doctors who are very smug about what they think they know. 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,” agrees Bonnie Cardenas, PT, who specializes in treating patients with complex, pain-related conditions. “Disagreement…is not to be tolerated.” 

Here’s how this dynamic can especially affect patients with chronic pain, who typically bounce from specialist to specialist: “Doctors give orders, and if patients do not follow those orders, the patients may  be branded as non-compliant, perhaps even defiant,” says Stocker.  When the “difficult patient” label is entered into a patient’s chart, Stocker says, it will makes every visit thereafter “one in which the physician goes into the meeting with preconceived notions, which may affect the treatment of the patient — leading to misdiagnoses.”

When a doctor expects a patient to be problematic, Stoker explains, the walls come up: “Once a practitioner reads or hears that someone is a ‘difficult patient,’ I believe the practitioner inevitably cannot wait for the appointment to be over. The practitioner does not believe a word that comes out of the patient’s mouth, so the practitioner does not listen. The practitioner also does not believe that the patient will listen, so the practitioner does not want to invest time and energy into the patient.”

Given this social reality, coupled with the fact that doctors are gatekeepers to medical treatment – ie, that a patient’s life very well may depend on a doctor’s good graces — doctors may end up expecting total compliance, and patients may end up delivering it.

Interested in this topic? Be sure to check out the Summer issue of Pain Pathways magazine, in which I explore the topic in-depth, in an article called, “The Good Patient Syndrome.”

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