How Being An Empowered Patient Might Save Your Life

Elsie was 52 years old when her belly started bloating, accompanied by bursts of intermittent abdominal pain and bouts of nausea and diarrhea. As a nurse, she knew enough about her body to feel convinced that her symptoms were related to eating dairy. She had gotten the flu, and knowing that the bowel lining can sometimes lose its ability to process lactose after a gastrointestinal illness, Elsie experimented with going dairy-free. Voila! She felt better, which reassured her of her self-diagnosis of lactose intolerance. When she snuck an ice cream cone at the beach and the symptoms recurred, she felt relieved, knowing that she wasn’t suffering from anything more serious.

Then a few months passed, during which Elsie lost the job she had held at a nursing home for twenty-two years. She also lost her beloved cat and found out her husband was having an affair. In the wake of these losses and traumas, Elsie’s symptoms worsened, even though she wasn’t eating dairy, so she made an appointment with her primary care doctor.

Elsie was naked except for a skimpy paper robe when her doctor knocked briefly on the door before entering the exam room. Dr. Morrison read from the notes his medical assistant had written. “Belly pain. Bloating. Nausea. Diarrhea. Worse with dairy.”

Elsie nodded her head.

Elsie’s Story

“Tell me your story,” Dr. Morrison said, looking up from his clipboard.

“It was right after I went through menopause,” Elsie began, “that I noticed the bloating. I thought maybe I was just getting fat, you know, the way women sometimes gain weight after menopause. But my belly wasn’t soft, it would blow up like a balloon. I could tap on it like…”

Dr. Morrison interrupted. “When you say bloated, are we talking here?” He put his arms out like he was holding a nine months pregnant belly. “Or here?” He held his hand an inch or two from his abdomen.

Elsie put her hand somewhere in between. “More like here.”

Dr. Morrison muttered and jotted down some notes. “And the diarrhea? Just soft or totally liquid?”

“Sometimes liquid, like water.”

“How often?”

“Two or three times a day.”

“What about the nausea. Did you actually throw up?”

Elsie shook her head. “No. Only when I had the flu. But once I got better, I just felt queasy, almost like I had morning sickness.”

“All the time?”

“No. At first, it seemed like it was only when I ate dairy, so I assumed I was lactose intolerant. That seemed to help for a while, but then I cut out dairy and I still felt nauseated.”

Dr. Morrision grunted and took more notes. “Anything make it better?”

Elise said, “Tums seems to help a little. I tried some Pepcid over the counter and that seemed to make me feel better too. But then it sort of stopped helping. I also tried taking some Metamucil. That slowed down the diarrhea but then it came back.”

Dr. Morrison asked, “Any blood in your stools? Constipation? New foods you’ve eaten? Strange travel?”

Elsie shook her head.

The Examination

“Okay, then. Let me examine you.” Elsie leaned back on the exam table, and Dr. Morrison pressed on her abdomen, tapping on it with his fingers, listening with his stethoscope over her belly button, performing a rectal exam and testing it for blood, which was negative. Dr. Morrison leaned out a hand and helped Elsie sit back up.

Creases wrinkled her brow. “What is it, Doctor?”

“I suspect irritable bowel syndrome, but let’s run a few tests first.” He handed her a lab slip, one prescription for radiology studies, and another for a drug he said he thought would help. Then he asked her to make an appointment for four weeks later, after all the test results were in. He stripped off his gloves and shook her hand before spinning around and exiting the room.

Elsie felt reassured but a little dazed. When she looked at her watch, Elsie realized that Dr. Morrison had been in and out of her room in eleven minutes. She thought of several things she had failed to share with him, things she thought he should know. In fact, she had made notes in her day book but she forgot to share the notes with him. She thought about asking the medical assistant to see if Dr. Morrison could come back in the exam room, but when she got dressed and stepped out of the room to ask, she couldn’t find Dr. Morrison or his assistant. She figured he was probably too busy anyway. She didn’t want to be a bother, so she gathered her things, made her follow up appointment, and left the office.

The Results

After her test results came back, Elsie returned and Dr. Morrison delivered the good news. Her stomach looked fine. Her gallbladder didn’t have any stones in it. Her stool sample didn’t show any unusual bacteria or strange parasites. Although he couldn’t say for sure without referring her to a gastroenterologist for endoscopy, he felt the findings were consistent with irritable bowel syndrome. He asked whether the medication he had given her had helped her, and although she had never filled the prescription, Elsie said yes. Dr. Morrison suggested staying off the dairy, avoiding beans, cauliflower, broccoli, cabbage, brussel sprouts, and sodas, and bulking up on high fiber foods. He asked her to return in six months for a check up.

After the appointment, Elsie kicked herself. Why had she lied to her doctor about the medication she never took? Why hadn’t she pushed for the referral to the gastroenterologist when the diagnosis of irritable bowel syndrome didn’t feel right? Why didn’t she share the sneaking suspicion she felt that something was terribly wrong? Why didn’t she tell Dr. Morrison that something was off in her body, something she didn’t feel right about ignoring for six months? Why didn’t she admit to the doctor that she suspected that her symptoms were somehow related to the traumas in her life – losing her job, the death of her cat, her husband’s affair? After all, she liked Dr. Morrison. She trusted him. But for some reason, she didn’t feel empowered to speak her truth or question his judgment.

The Real Results

By the time Elsie came back to Dr. Morrison’s office for her six month follow up, she had stage 4 ovarian cancer.

Now, Elsie’s diagnosis may very well have been unavoidable. After all, ovarian cancer often presents with vague symptoms that may be misdiagnosed as gastrointestinal disorders, and with no effective screening tests available, it’s often already in an advanced stage when it is diagnosed. But as a nurse, Elsie, who has since undergone extensive treatment and is now in remission, still second guesses herself because she thinks she failed to advocate for herself in Dr. Morrison’s office. She doesn’t blame Dr. Morrison. She certainly isn’t planning to sue him for misdiagnosis. As a nurse, she knows these things happen and doesn’t consider herself litigious. But she does wonder whether her cancer might have been caught earlier, if only she had spoken up when her gut instinct told her the diagnosis of irritable bowel syndrome was incorrect.

When Elsie looks back with what we health care providers call the “retrospectoscope,” she suspects that her life stressors and her cancer are linked, that perhaps the stress of her unhappy marriage weakened her immune system and predisposed her to illness. As a nurse who followed my blog and was aware of the scientific data I was writing about in my book Mind Over Medicine: Scientific Proof You Can Heal Yourself, she thinks she might have been more proactive in taking actions to improve the health of her mind and with it, the body.

But as someone trained in old school medicine, she didn’t know how to bring this information into the exam room with Dr. Morrison. Even though she was a nurse, she felt like Dr. Morrison held all the power, like it was his job to make her diagnosis and plan her treatment, like her voice and her instincts didn’t matter as much as the test results and Dr. Morrison’s gut feelings about her diagnosis. She also worried that he would think she had a screw loose if she suggested that her symptoms could be related to her unhappy marriage or her job stress. So she kept quiet to avoid the discomfort of taking a stand for herself, a decision she now regrets.

Transformation

But no more. Her cancer experience transformed Elsie from a relatively passive “victim” of the health care system into a fierce advocate for herself and other patients. Elsie still sees Dr. Morrison as a patient, but only because, one day, at her request, he consented to booking her as the last patient of the day and having a heart to heart with her. Elsie began the conversation with Dr. Morrison by expressing her immense gratitude for all he had done to care for her over the years. She expressed compassion for the pressures of his job and the fact that managed care was putting the squeeze on him and his schedule. She told him she didn’t blame him for the delay in her cancer diagnosis, that, if anything, she blamed herself for not speaking up. She even thought she caught him tearing up a bit when she told him how sorry she was that things have gotten so hard for doctors in the past decade.

Then, after she felt an opening, she confessed to him all of the frustrations she had felt over the years – how he interrupted her rather than hearing her out when she wanted to tell him her story about her body, how she sometimes felt like a body part rather than a whole person, how she felt dismissed when she suspected that her personal life might be affecting the health of her body, how he gave orders rather than asking her whether she agreed with the diagnosis or treatment plan, and how she was sorry she had lied to him in the past instead of telling him the truth when she didn’t agree with the plan.

Elsie asked Dr. Morrison’s permission to establish a new kind of relationship with her doctor, one that allowed her to become an equal partner in her own care and empowered her to speak her truth and question anything that didn’t feel spot on, one that left an opening for the mind-body medicine ideas she was increasingly embracing, one that would take some of the pressure off the doctor because she was willing to bear more of the responsibility herself, one that left her feeling like, instead of handing her body over to her doctor the way she would hand her Toyota over to the car mechanic, she might play a bigger role in educating herself, making the right diagnoses, and instituting treatment plans aligned with her intuition, plans that might even include some “airy fairy” treatments she had been exploring, like energy medicine and homeopathy.

Elsie says, “That conversation changed my experience, both as a patient and as a nurse.”

Are You An Empowered Patient?

Are you willing to stand up to your doctor and speak your truth? Do you share your intuitions? Would you be willing to initiate a conversation with your doctor like the one Elsie had with Dr. Morrison? Tell me what you think.