Anyone who has ever had embarrassing bloating, constipation or diarrhea can relate to the feeling I had when I was in the doctor’s office over a decade ago explaining my severe gastrointestinal symptoms. My illness journey began 13 years ago, and I wish I knew then what I know now about self-advocacy, and about how physicians should be collaborating with their patients.

I had been to the emergency room with severe symptoms of rectal bleeding, severe abdominal pain and diarrhea. Diagnostic testing, including a colonoscopy, came back negative for conditions like Inflammatory Bowel Disease (IBD). There was clearly a problem, and these symptoms were affecting my quality of life but because there was not a clear cause found in the tests, it felt like my doctors suddenly said “we don’t really care anymore” even though I was still experiencing disruptive symptoms. 

My experience with my doctors left me discouraged and frustrated. The process of finding new doctors and seeking a diagnosis became time intensive and costly, so after a while I stopped trying. I dealt with my symptoms on my own and worked my life around my illness. About 10 years into my illness, I started working with Dr. Douglas Drossman, a gastroenterologist who specializes in conditions such as Irritable Bowel Syndrome (IBS), chronic abdominal pain and other conditions that are now called Disorders of Gut-Brain Interaction (DGBI). I learned how to advocate for myself and better communicate the impact of my symptoms. I learned a hard lesson by not knowing how to effectively communicate with my providers, but I know better now.

Dr. Drossman listened to my concerns and was able to diagnose me with post infection IBS. We worked together to decide on the best course of treatment, which was ultimately successful for relieving my symptoms. Ultimately, the positive patient-provider relationship was just as therapeutic as the pharmacological therapy after over a decade of negative interactions and suffering. 

This issue is much bigger than me. More than 61% of Americans are afflicted with gastrointestinal symptoms, and 40% of those have Functional Gastrointestinal Disorders which are now called DGBIs. Millions of patients with these illnesses are misdiagnosed, untreated and frustrated by lack of medical insights into their condition.

This problem is so big that I wrote a book on the subject, Gut Feelings, co-authored with Dr. Drossman. This book’s purpose is to educate both patients and physicians about these conditions so they can communicate more effectively about DGBIs, and those learnings can apply to other health situations as well.

Finding the right doctor and treatment plan for your illness is critical, but it still falls upon us to be our own advocates and this is what I recommend for anyone feeling dismissed in a doctor’s setting:

  1. Keep a journal. Because time in a clinic visit is short, it is easy to get flustered and blank on specific concerns. Write things down ahead of your appointment. Journaling your symptoms in advance can help so you do not stumble on words, and you can refer to your notes during your doctor’s visit. Be sure to focus on when the symptoms began, what makes them worse or better and any external factors that might also affect the symptoms such diet or a specifically stressful situation like the loss of a job or a death in the family that might have occurred around the same time the symptoms began.
  2. Actively seek a dialogue with your physician. Even in the pandemic environment, there are ways to have meaningful and productive patient-to-doctor dialogue whether that’s in-person or through telemedicine. You have a right to be heard and to engage with your doctor as a partner in your care. Voice your concerns and feelings about your treatment plan and symptoms so you can work together to improve your care.
  3. Ask about other testing methods. Your physician may recommend different testing measures to determine a diagnosis for your condition. These are important if there are red flags such as weight loss, a family history of GI cancers or blood in the stool. However, traditional testing show negative results for conditions like IBS, chronic constipation or diarrhea.  For these disorders the Rome IV Diagnostic Criteria is the standard for making a diagnosis.
  4. Know that it’s okay to seek a second opinion. You don’t have to accept dismissive or disrespectful behavior just because your doctor is in the position of medical expertise. You have the right as a patient to serve as a partner in your care with your physician. If your doctor is dismissive, it’s okay to seek a second opinion from another doctor who will work with you as a partner in your care.