Welcome to Foreign Bodies!
Show Transcript
I’m Dr. Zach Spiritos. I'm a board-certified gastroenterologist and today we're here to discuss a silent battle being fought all over the world, chronic disease. Our podcast is called Foreign Bodies, where we will do a deep dive into the lives of those who face these challenges head-on. Living with a long illness is uniquely challenging because it requires lifelong management, has an erratic course, and generally goes unnoticed and under-discussed. A few examples of chronic illnesses are Lyme disease, fibromyalgia, Parkinson’s, ALS and POTS.
The unrelenting and capricious nature of long illness can be exhausting for patients, their support networks, and medical teams. Sure, most of these diseases are well described and have tried and true therapies. But helping people heal is a lot more complex than prescribing a medication. That's because being diagnosed with a chronic condition affects more than physical health. It is a full-blown and coordinated assault on someone's identity. The burden of chronic illness is heavy, and it can affect mental health, social relationships, financial stability, and future planning.
Living with long illness can be a lonely journey, but it doesn’t have to be. We can help create a culture of support and understanding through awareness and open dialogue. One of the missions here on Foreign Bodies is to allow people to speak freely about their conditions, and touch on all the complexities that come with it. We hope to forge connections with and motivate others in similar situations, inform friends and families how to support their steadfast loved ones and educate healthcare providers on how they can better treat their patients.
This is a podcast about storytelling, advocacy, and education.
Welcome to Foreign Bodies.
In a quiet hospital room, a patient sits nervously, their hands clasped tightly together as they wait for the results of their colonoscopy. Chronic abdominal pain and frequent bouts of diarrhea had plagued them for months, leading them on a journey of uncertainty and discomfort. The fear of the unknown looms large in their mind, conjuring up images of worst-case scenarios.
The physician enters the room and delivers the news with a sense of routine that belies the gravity of the diagnosis, “Unfortunately, do you have Crohn’s disease.” It feels like their worst nightmare had come true. The physician speaks of successful treatment options, their voice laced with optimism and reassurance. They detail the path ahead, emphasizing the importance of managing the disease and maintaining a positive outlook. While the patient listens intently, absorbing the information and nodding along, a whirlwind of conflicting emotions rages inside them. Their head is spinning with logistical questions such as, “Will I be able to keep my job?,” to more deep-rooted fears like, “Will I ever be myself again?”
Interactions such as this occur every day, and unfortunately, these are very important questions that physicians aren’t well equipped to answer. In fact, one of the reasons that I wanted to start this podcast is that I had a growing number of unhelpful responses to important questions my patients were asking, specifically as it pertains to the practical side of living with the illness. For example, when asked, so I have Ulcerative Colitis, what’s a discreet way to carry around extra toilet paper? Or, I have liver disease, what non-alcoholic drink can I safely enjoy to help me kick back? I don’t really have a clue.
Helping someone heal, in the true sense of the word, goes beyond calming down an inflamed colon with steroids or prescribing a breathing treatment. Of course, medications play a role in relieving physical complaints. But there’s so much more to achieving whole-body health than symptom control. For example, how do we address the way long illness affects someone’s identity or self-worth? This type of healing can only be initiated from within, as opposed to relying on external forces such as a medication or surgery.
Here on Foreign Bodies, we will not offer definitive answers to these types of questions. I wish we could, but the fact of the matter is that there aren’t straightforward solutions. There’s no blueprint for dealing with long illness. But what we will do is listen. This simple but powerful act can be a foothold to help others answer these questions for themselves. For example, perhaps hearing that mindfulness or biofeedback help with chronic pain makes sense for someone out there, and encourages them to do the same. There’s not a one-size-fits-all all approach to these challenges, so we plan on highlighting the experiences of many different individuals with many different conditions.
A secondary, but equally important goal that we have, is to galvanize and educate people’s support networks. The paradox of supporting someone with long illness is that they want us to be clued into their symptoms, but they may find it tough bringing it up in conversation. “Hey, should we get extra onions on our pizza?” “Well, only if you want me running to the bathroom before the check drops.” The timing is hardly ever right. To make matters more challenging, there’s usually no gaping wound or neck brace to cue us that anything is wrong. People living with long illnesses generally look healthy so their support networks are led to believe that they have beaten their illness, when truthfully it colors almost everything that they do.
Therefore living with a long illness can be lonely existence. These people need their support networks more than ever, but their loved ones often don’t know what’s going on or how to say the right thing. So a lot of stress is internalized, and intrusive thoughts such as, “Will my loved ones still be there for me when I take a turn for the worse?” tend to creep in. I’d like for this podcast to be a space for people to call attention to the challenges of living with chronic conditions and identify ways in which they can be better supported by friends and family. Victor Frankl was an Austrian psychiatrist and Holocaust survivor who wrote that survival is a community event. And that's what we're doing here. I hope our show helps facilitate discussions between the chronically ill and the support networks, so we can be proactive in suggesting, “Hey do you want to stay in tonight instead of going out?” or “Let’s find a hike with accessible bathrooms.”’
And lastly, this show is for healthcare providers. Caring for the chronically ill is extremely challenging under our current circumstances. The medical system rewards productivity as opposed to improved patient outcomes, is laden with extremely sick people who need urgent attention, and we're drowning in paperwork. The result is insufficient face time with patients. On average, a provider may have 15 minutes to speak with a patient in clinic. How is anybody able to tease through the complexities of chronic disease in this short period of time?
Furthermore, we have been conditioned to treat pathology, but not necessarily people. For example, modern medicine has evolved to include highly specialized fields that focus on specific organs, systems, and diseases. This has led to incredible advancements in diagnostics, treatment, and research. However, the human body is a complex and intricate system in which the body operates as a unified whole, with each part playing a vital role in maintaining overall health and well-being. Changes or disruptions in one part of the body can have far-reaching effects on other systems and functions. The current structure of patient care focuses on the body’s disparate parts, as opposed to recognizing its interconnected nature.
For example, when a patient with irritable bowel syndrome is sent to a gastroenterologist, the physician is trained to test for alternative pathology, offer dietary advice, and prescribe medications to help improve abdominal discomfort and stool consistency. However, patients with IBS are disproportionately affected by anxiety and depression, sleep disturbances, chronic pain, and fatigue. By focusing on just the gastrointestinal complaints we fall short of addressing the whole person.
My hope is that our discussions on Foreign Bodies will pull back the curtain on lesser known sensitivities and challenges that our patients face, so that we can create more meaningful patient-provider bonds. The intent here is to listen to understand as opposed to listen to respond. After all, we know that a trusting relationship between patient and their provider leads to better treatment adherence, patient satisfaction, and health outcomes.
In closing, I really like how Susan Sontag describes our relationship with disease, “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” Basically, we’re all in this together folks. And here on Foreign Bodies our goal is to be collectively smarter about how to care for those with chronic illnesses. We will invite both medical experts and patients with long illness to tell their stories touching on topics such as diabetes, inflammatory bowel disease, Cancer, endometriosis, Parkinson's, POTS, fibromyalgia, amongst many others. We invite you to visit our website, foreignbodiespodcast.com, where we post personal testimonials of those living with chronic illnesses. Please send us your own stories and we'll post it to the site. Lastly, if you have any recommendations for topics that we should cover, we're all ears.
Come join us in this journey of healing and growth on foreign bodies.
