“My greatest lesson was learning I was not alone, that people were willing to help, and others had been where I was and came out the other side. And this is when my life began to take a different path.” This is a powerful and meaningful statement from Lesley, one of Dr. Drossman’s patients who shares her story of medical illness and the psychosocial toll it took on her. Lesley is one of eight patients who share their personal and unique medical journeys and what they learned in Gut Feelings: The Patient's Story, Personal Accounts of the Illness Journey. It is the second book by Doug Drossman and Johannah Ruddy whose first book, Gut Feelings: Disorders of Gut-Brain Interaction provides extremely valuable information about the medical aspects of irritable bowel syndrome (IBS) and other Disorders of Gut-Brain Interaction (DGBI).
As a physician, it can be challenging to find comprehensive, scientifically accurate, and patient-friendly information in one resource for patients with DGBI. I have recommended the first book to many of my patients. It has been so impactful to hear them say that it provides them with hope, validation, and a better understanding of their condition. One of the most compelling parts of the book for them is the patient perspective by Ms. Ruddy. The book empowers patients to know that these conditions are real, based on growing scientific evidence, and that they are not alone. Recognizing the power of a patient’s unique experience dealing with a multifactorial, complex medical illness can be challenging to diagnose and treat.
Dr. Drossman and Ms. Ruddy have now written this follow-up book to provide more in-depth patient narratives. In addition to the patient’s perspective, we also hear from Dr. Drossman, a pioneer and leading expert of DGBI, who describes his thoughtful interpretation of each patient’s medical history and his approach to managing their condition. As a patient with DGBI and patient advocate, Ms. Ruddy shares her perspective on each patient’s journey, including her own, and the lessons we can all learn from these stories.
One of the most fascinating aspects in the management of DGBI is the integration of multiple, interrelated factors distinct to each patient which contribute to the overall clinical presentation and guide management. Although each patient narrative is unique, there are similar themes in the patients’ experiences. Many of them experienced physical (e.g., a gastrointestinal infection) and/or environmental events (adverse life events) associated with prolonged stress prior to the onset of their gastrointestinal symptoms. They also developed coexistent medical illnesses, such as interstitial cystitis (IC), postural orthostatic tachycardia syndrome (POTS), anxiety and/or depression. Nevertheless, the wear and tear on the body’s systems can manifest in different ways so each patient case is distinct. In addition, there are also experiences and perspectives that are specific to each patient. Recognizing these unique factors is imperative when providing effective, long-term patient-centered care. This is ideally accomplished by both patients and healthcare providers by being open, knowledgeable, patient, non-judgmental, and partnering in a trusting patient-provider relationship. This was a common theme expressed by the patients. For example, after meeting Dr. Drossman, Allison is grateful and relieved to have someone who listened, knew the answers, and created a partnership approach to her care. In her words, “It starts with a foundation of trust and open two-way dialogue. I learned how meaningful that relationship is to the patient's success and, ultimately, the satisfaction of both the provider and the patient.” In Johannah’s narrative, she said that “Knowing that he [Dr. Drossman] wants my input lets me know I can trust him, which makes me compliant with the treatments we decide on together. My interaction with my provider helped me find my voice and advocate for myself.” Another patient, Wendy, brings up the important point that actively listening to patients is therapeutic. She writes that “Simply knowing he [Dr. Drossman] wants to hear my concerns is therapeutic, but more importantly, he knows how to answer and provide solutions.”
Reading the patients’ narratives made me realize how much the healthcare providers’ behaviors affect patients. As a physician taking care of patients for a long time, I know that most of the communication between individuals is non-verbal. But I didn’t completely realize how much our behaviors and responses can affect a patient on multiple levels. Patients undergo countless diagnostic tests which often have negative results and multiple treatments that are not beneficial, both of which can be frustrating to both patients and providers. In Allison’s narrative, she writes, “The physician was frustrated (he tried so hard not to show it), but I know he felt so badly that he could not help me figure out or ’fix ‘it, and he had run out of procedures and interventions. I was frustrated for those same reasons. I needed answers, and most of all, I needed to feel better physically, emotionally, and socially. These experiences were causing stress and anxiety, which increased the pain and symptoms of the GI condition and my other chronic pain/inflammatory conditions. It became a vicious cycle, a never-ending loop of pain and discomfort. It impacted my job, relationships, quality of life, and the ability to travel even short distances and navigate my everyday life.” I appreciate how impactful and influential our actions as healthcare providers are to patients and that we should be cognizant of how we are perceived and how well we communicate with our patients. Both Dr. Drossman and Ms. Ruddy provide reflective perspectives on how to enhance communication between the patient and provider to ensure a more collaborative and therapeutic relationship as well as a greater chance of successfully relieving symptoms and improving overall well-being.
All of the patients describe how helpful and empowering it is to learn more about their medical condition and available, effective treatments. As Alex notes in his narrative, “I am better overall and feel more understanding of what is going on, and this gives me more control (‘Knowledge is power ‘).” In another patient narrative, Dr. Drossman observes that “Katherine's ability to keep going and keep searching for answers instead of throwing up her hands in frustration with her care was key. Through severe symptoms, hospitalizations, and medical uncertainties, her ability to self-advocate allowed her to eventually find providers who would become her partners in her care. She then received a clear and positive diagnosis and effective management, which validated her efforts. Now with confidence in the diagnosis and clinical education about what is happening in her body and effective management options, she obtained relief.”
To me, the stories and perspectives shared in this book will undoubtedly be invaluable to readers. It will provide hope and validation and empower patients to be their own advocate but know that they are not alone. A compelling lesson learned by Dr. Drossman’s patient, Lesley, is that patients are not alone and when they gain more knowledge and have the support of others they trust, there is a path forward to getting better and gaining more control over symptoms and improving one’s quality of life.