I have finished my monster business plan and am off to Kinko’s to print and bind it. Wahoo! I’ve been working intensively on this plan for half a year now. I am super excited that it’s done and that I now can hit up banks and investors for some Benjamins to get the air under this here puppy’s wings. Sorry about the recent lull in writing activity, but the blog will be back in full swing shortly!

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About 15 years ago, before the onset of chronic and debilitating pain and way before the creation of the Dancing with Pain method, I was in a creative expression program for women – one that I remember involved writing and painting, and that probably also involved movement. For the last day of class, each participant was asked to bring a gift from home – an item that meant something to her, to give away to another student.

The bronze dancing woman

That last day, we all lined up, with our mysterious gifts hidden behind our backs. One by one, we walked past the line of women, tapping the one whose gift we wanted.

When it came my turn, I put out the intention to receive what I needed. I then felt a distinctly magnetic pull to one woman in particular, someone I would not have chosen. I tapped her, and she revealed the gift: a tiny green glass bowl with a bronze dancing woman inside.

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I’d been sitting in the sunshine, next to a pristine lake for 8 days - swimming, sunning, swimming some more, reading, drawing, chatting with friends. I finally said to one of my friends, ”I have this really weird pain in my abdomen, and it’s been getting worse. I thought I was constipated, but that’s not it.”

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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With my clients, I see that being in chronic pain shifts the nature of their relationship to friends, family and significant others. Needing more assistance in all aspects of living can change the way people think of themselves. They may not want to engage with others — to avoid asking for help or to avoid having to choose between not talking about pain, and feeling as if they are being dishonest about where they are at, or talking about it and risking a poor response. 

On my part, I focus on creating a safe, comfortable place, where those with chronic pain can share about their pain without being judged. 

I think support groups make a huge difference in helping people feel they belong, even when going through difficult times. I think that any trauma — whether physical, mental, emotional, or spiritual — at some level creates a difference of experience that forms a wedge between us and our regular social groups. People respond to us differently; we don’t get the understanding or mirroring that we want and need; and we are forced to look elsewhere.

Until we find a new “tribe” of people who “get it,” we feel socially ostracized on some level. The feeling of non-belonging is heart-breaking, wrenching, and incredibly painful. Finding a place of belonging is key to healing.

Anasuya Basil, NC, Dipl. ABT, CST, is the director of My Body Wisdom, through which she offers in-person or virtual holistic health counseling, cranio-sacral therapy, nutritional guidance, and other forms of mind-body medicine.

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I recently had the opportunity to interview Beth Darnall, PhD — Assistant Professor at the Department of Anesthesiology & Perioperative Medicine at Oregon Health & Science University, about how to optimize the patient-doctor rleationship, for effective treatment of chronic pain:

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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