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.

Encouraging you to be an equal partner in your health care,

Enjoy this post? Subscribe here so you don’t miss the next one.

Follow Lissa on Facebook

Tweet Lissa on Twitter

Feel free to share the love if you liked this post

Image courtesy of:  www.nickdelgado.com

Share this post:

Follow Lissa:

Follows

You May Also Like…

12 Comments

  1. Virginia Urbach

    How is Elsie now? Hope she’s doing better.

    Reply
  2. Rhona Creel Davis

    Sometimes, Doctors do not welcome this type relationship. In fact, they refuse to listen, acknowledge and just ignore the patient. Sometimes, this occurs during a CRISIS. My husband was ignored. He was diagnosed with CML and when all tests were completed and the hospital admission date arrived things continued to make me very uncomfortable. I am a Registered Nurse who had been injured at work and was totally disabled from work. I lived in constant severe pain and my husband had been my primary person. There was no family nearby and none willing to give up their livelihood and without my income we could definitely not afford to hire someone.

    After chemotherapy, total body irradiation, bone marrow transplant (a sister was his perfect match) he progressed through normal stages. He developed a fever and pain in his left chest but he was up walking, talking, coherent, and EVEN THOUGH WE WERE ASSURED THERE WOULD ALWAYS BE AN ONCOLOGIST ON DUTY IN THE HOSPITAL, THERE WAS NOT ONE THAT NIGHT. THE NURSE CALLED HIM AT HOME AND HE ORDERED ANTIFEVER AND ANTIBIOTICS AND ASKED HER TO HAVE THE RESIDENT ON CALL TO HAVE A LOOK AT HIM AS IT WAS MIDNIGHT. T

    Reply
  3. Lissa Rankin, MD

    Elsie is doing well, Virginia. Thanks for asking!

    And Rhona, I’m so sorry you had such a bad experience. It always breaks my heart to hear such stories. I apologize on behalf of doctors everywhere who aren’t listening or being as present for their patients as patients need…

    Much love
    Lissa

    Reply
  4. Luna Raven

    Yes I am! When I went from 135 to 280 in less than a year I knew something was very wrong. I changed my diet and exercise pattern to no avail, was suffering bad mood swings and in general felt not myself. When I tried to speak to my GP her response was ‘you’re fast, Louise weight.’ Which left me feeling she hadn’t heard anything I said.

    When I made a routine appointment with my OBGYN, she commented on the weight gain and asked what was going on. She ran tests for everything she could think of and each one showed I had a clean bill of health. I read an article on PCOS and when the lightbulb went off I took it to her and lo & behold I was right.

    After a serious issue with the metformin, I chose to go the route of Chinese medicine with the full support of my doctor. The last time I saw her she was amazed at well I have maintained without any medication. But I am so grateful to her for listening, for hearing all that I said because I don’t know that I would ever have been diagnosed otherwise.

    Thank you for sharing such a great reminder that we have more power than we think!

    Reply
  5. Katherine Macomber Millman, LMP

    Lissa, I love what you are saying. And I’m so happy that you are speaking from the perspective of being trained as an MD. It’s a huge service to ALL of us.

    As a licensed massage practitioner for 26 years, I really “get” that our healthcare system has gotten “out of control” as a direct reflection of the extent to which we are out of touch with our own bodies, and the natural world in which we live. It has become commonplace to look externally — to look outside of ourselves — to medical or healthcare professionals to hold the information and know-how to address our most basic healthcare needs.

    But I think that what you are doing, from this platform, is part of how we’re starting to change all that.

    It’s like you’re holding the question, “What would happen, how would it change our personal experiences of health, if we turned within, for those answers? What if we became less healthcare consumers, and more healthcare practitioners — not in the sense that everybody becomes a nurse or acupuncturist or MD, ND, DO, DC etc, but in the sense that every body is in the practice of attending to their own health and well-being?

    I love being part of all these changes. And I love the energy, knowledge and wisdom that you are bringing to the larger conversation. THANK YOU SO MUCH, Lissa!!

    Many Blessings,
    Katherine

    Reply
  6. Susan Limbaugh

    Hi,
    I’m an internist. Any woman over 50 that comes to my office with abdominal bloating gets a CT scan to rule out ovarian cancer. I almost don’t care about any other history. It’s textbook/ medicine 101! So, please let this be the message to your readers. – female over 50 with abdominal bloating = CT scan. Demand it.
    Thanks.
    Susan

    Reply
  7. Lissa Rankin, MD

    Karen, I love that- yes, we as patients can also be practitioners, weighing in with ourselves and trusting ourselves, while still seeking outside help.

    And yes Susan- as an OB/GYN, I totally agree.

    Much love
    Lissa

    Reply
  8. Dianne Williams

    When I read Elsie’s story, especially the words ‘ovarian cancer’, a palpable shiver ran through my body. I am relieved and overjoyed that Elsie is doing well. Thank you God. Just prior to reading this post, I sent an email to my naturopath describing my symptoms, current supplements and questions. After 7+ years of a roller coaster journey through menopause, dealing with hypothyroidism and adrenal exhaustion, food allergies, etc. with the help of 3-4 different naturopaths, I am close to giving up hope that I will ever feel like me again. The amount of conflicting information circulating about thyroid disease is stunning, especially because this disease has reached near epidemic proportions in our country and yet remains one of the most under-diagnosed diseases. What is amazing to me is that in those 7 years of searching for wellness, I think one of the doctors I’ve seen has even palpated my thyroid gland. I have been complaining of bloating for months now but not once has a doctor performed a physical exam. While I feel it is critical to embrace the mind-body connection in diagnosing and treating patients, it is just as important to use good science to help put the pieces of the puzzle together. Scary thing is, my mom was diagnosed with stage IV ovarian cancer about 10 years ago. She survived the cancer but fell prey to alcoholism – another one of those diseases we don’t even call a disease though it devastates countless lives and tears families apart. Thanks for the nudge Elsie and Lisa. I’m going to ask for a complete physical when I see my doc next week. Love and hugs to all, Dianne

    Reply
  9. Katherine Torrini

    Such a great reminder! I always used to be very empowered with doctors, but had gotten tired of being the “weird patient” and had started being more compliant. This encourages me to stick to my guns when my gut says differently. Thanks, Lissa!

    Reply
  10. Sally Gabriel, PhD

    Thank you, Lissa, for a wonderful reminder of how to advocate for ourselves.

    I became am an advocate for my own health after having CFS and bouncing around from doctor to doctor. I finally gave up and went outside to the “alternative” medical system, and got well.

    It is not easy being your own advocate, as sometimes I pick the wrong doctor.
    I have been fired three times by doctors – two women and one man. All three were undoubtedly threatened by my desire to participate in my own health care (can you imagine that?). But I have learned to move on until I find a doctor willing to work with me on my terms. It can take awhile, and sometimes I have to drive long distances to find what I need.

    I really hope the new crop of doctors (I hear there are more women in med schools now than men) will do a better job listening to patients than today’s doctors.

    Reply
  11. Malcolm R Shaffner

    Thank YOU I think you where spot on , too bad it didn’t happen sooner.
    BUT you open my eyes I have to take a more active role in my recovery I have a GREAT doctor.
    BUT I am the one not eating right, I am the one not exercising right ,I am the one not meditating.and talking to my body.
    I am a diabetic (2). 260 lbs 5′ ‘9”. I am 71 years young. I was diagnose 10 years ago
    So how do I develop the discapliant to take charge of my body, and my thoughts.

    Reply
  12. Robin Maupin

    Lissa:

    Thank you thank you thank you!!! I was diagnosed with ovarian cancer 15 years ago. I was very lucky to have a gyn who listened to me and ordered all the proper tests and then referred me to a gynecologic oncologist, a specialist who has the expertise needed to do the very difficult and precise surgery that gives those of us with this diagnosis the best opportunity for survival. Since my diagnosis, I have lost many friends in the ovarian cancer community and so many had the same story as Elsie. Ovarian cancer is one of those diseases that because there is no test for early detection, and especially because many patients are not proactive about their symptoms, and I have to add, that many doctors are not putting this disease on their radar screen, it is usually found in the late stages of the disease. I founded a local organization that educates the public about ovarian cancer. We also give presentations to 3rd year medical students in order to put a face on ovarian cancer, so that as doctors, they will rule out ovarian cancer when a women presents with some of these symptoms. They are: bloating, difficulty eating or feeling full quickly, unexplained urinary problems, pelvic pain, I facilitate a support group for women in treatment. I find that the need to be proactive continues as patients undergo treatment. We discuss the need to be a partner with your doctor instead of just a silent patient with no voice. It’s our life and our body after all!

    Reply

Submit a Comment

Your email address will not be published. Required fields are marked *