RARE Daily

Talking Can Be Excellent Medicine

January 25, 2023

by Jenna Kwiecinski
Medical Student at Cooper Medical School of Rowan University

Throughout my undergraduate career, I was a camp counselor for Muscular Dystrophy Association’s summer camp. For one week every summer, I was paired with a camper where I was their 24-hour caregiver, friend, and confidence builder. While being involved with Muscular Dystrophy Association gave me first-hand experience with rare diseases, it did not allow me to see the medical discrepancies that these individuals face every day. Summer camp was a time for these children to be carefree and act like kids, not to be patients. Despite being surrounded by individuals battling rare diseases, my knowledge about them was minimal. There was no talk about insurance or access to care or the difficulties of daily living. It was not until I became involved in the RARE Compassion Program where I truly began to understand the hardships and frustrations that individuals with rare diseases battle every day.

When I first joined the RARE Compassion Program, I was a first-year medical student in the midst of a pandemic. My school was fully online, I had not met the majority of my classmates, and my extracurriculars were lacking. My advisor told me about this program, and I figured “why not?” Fast-forward two years, and that simple “why not?” has changed my life for the better. Living with a rare disease used to be foreign and unfamiliar to me, but after two years in this program, I now recognize the struggles and obstacles that these individuals face.

Some of the first words that I heard during my time in the RARE Compassion Program were “I have thought about killing myself.” This sentence was followed by a long dialogue about the stress of everyday life, the strains of personal relationships, the feeling of losing one’s autonomy, and the feeling of complete and utter loneliness. As they continued to speak, I could hear the frustration and hardship in their voice. I had no clue how to respond. I could not say, “I understand how you’re feeling” – I did not understand. I could not say “I’m here for you” – we had barely spoken for 15 minutes; she did not know me. I could not say “things will get better” – they might not. I knew nothing about rare diseases or how they impacted people’s lives, and in just a few minutes I was thrown into the deep end, grasping for anything to keep me afloat.

There were a few seconds of silence once my patient partner stopped talking while I scrambled for the right words to say. Before I could respond, I heard an audible sigh of relief. “WOW… I never get the chance to vent like that. I feel a weight off of my shoulders just saying that out loud.” For the rest of our meetings, and for all of our future meetings, my patient partner and I were able to talk openly with one another. Trust was established early on; there were no boundaries.

I have experienced that moment of silence followed by a cathartic, audible sigh every time I meet with one of my patient-partners for the first time. This sigh has become my inspiration for continuing this program. In that moment, I can hear my patient-partner’s voice change. Having someone listen to their entire story provides relief and understanding, but most importantly, it makes them feel heard.

Talking can be excellent medicine. A study conducted in the Journal of General Internal Medicine found that patients are given an average of 11 seconds to speak before they are interrupted by their physicians. 11 seconds. That is nowhere near enough time to recognize a patient’s concerns, nor is it enough time to develop trust or build a relationship between a physician and a patient. By listening to my patient partners talk uninterrupted, I am able to firsthand witness a change in their overall mood, as well as a change in trust.

Thus, the RARE Compassion Program allowed me to recognize the value of listening. My patient partners have taught me to cherish a patient’s story. I strive to establish to same sense of trust with all of my future patients. Every time I reflect back on my time in this program, I will be inspired to focus on the humanistic side of medicine and to be an advocate, a listener, and an ally for my future patients, especially individuals with a rare disease.

Being in this program not only impacted my future goals as a physician, but it opened my eyes to the day-to-day struggles that individuals with rare diseases experience. Access to care can be difficult for rare diseases. Specialists are even rarer than the disease itself. My patient partners and I often discussed the hardships they have faced trying to find specialists in their disease. Throughout all of my rotations in the program, I continue to be astonished to hear that several of my patient partners had to fly to see their specialists. This not only results in a delay in receiving adequate and timely care, but it is also a financial burden, as they have to spend money on plane tickets and housing accommodations on top of their already expensive medical bills.

My patient partners also had a deep mistrust of the medical system. Every single one of my partners emphasized how they refuse to go to the emergency room. Every time they have gone in the past, they were deemed as demanding or drug seeking because they try to inform the physicians of their exact medical needs. One of my patient partners had a very specific regimen of medications that they needed for a flare up. It was written in her MyChart, she was informed several times by her pain management physician, and she has had it work in the past. But every time she went to the ED, physicians would roll their eyes at her and ignore the information.

My patient partners also discussed how much their rare disease affected their mental health. Something as simple as going to the grocery store or going out to dinner with family was difficult, and they had to constantly worry about where they would place their walker, if there were any stairs, or if they could navigate the setup. One of my patient partners even had difficulty going to their primary care provider’s office because the door was too heavy, and they could not manage to pull the door open while maintaining a grip on their walker. Unfortunately, she did not share this story with her physician because she was embarrassed that she could not do something as simple as open a door. However, if there was an open and trustful patient-physician relationship, then they would have been more inclined to share this difficulty. As a future physician, I will encourage all of my patients to be open and sharing with me. I will listen attentively and make sure that their voices are heard.

Despite all of the advances that have been made in medicine, there are an immense number of rare diseases that lack information, knowledge, and awareness. Unfortunately, patients who have these rare diseases are often neglected and ignored by our healthcare system. Access to care is limited, treatments are few and far between, and everyday living is demanding and sometimes unmanageable. Being involved with this program has taught me to never settle and to never be content with the realm of knowledge that I have. There is always more to see, learn, and do – especially in medicine, and especially in regard to rare diseases. Throughout the past two years in this program, I have developed an overwhelming sense of wonder and a desire to learn and improve my understanding of rare diseases, and I encourage all of my classmates to become involved in this program.

As medical students, a common principle that we are told is “If you hear hooves beating, think horse not zebra.” We are encouraged to think about the most common solution or answer instead of focusing on something rarer. However, this saying does not work for those patients who are the zebra instead of the horse. Rare diseases are often misdiagnosed, and it takes months, even years, before an actual diagnosis is made and proper treatment can be started. Approximately 4% of the total world population is affected by a rare disease. Although 4% does not seem like a lot, there are 7.9 billion people in the world. Ergo, that mere 4% impacts millions of people. Thus, it is important to think about both the horses and the zebras. As a future physician, I will ensure that I truly listen to my patients and continue to be an ally for rare diseases. I will be a physician who is empathetic, honorable, and attentive – all of which are qualities that the RARE Compassion Program has taught me.

The David R. Cox Scholarship is an opportunity offered to medical students in our Rare Compassion Program. In 2022, participants were asked to submit an essay about their experience working with a rare patient or family. Among the numerous essays received, three winners were selected. For more information about the Rare Compassion Program or the Cox scholarship, please email us at [email protected].

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