The Other Side of the Stethoscope: My Journey with Liposarcoma

The Other Side of the Stethoscope: My Journey with Liposarcoma
Photo by Julia Zyablova / Unsplash

Being on the other side of medical treatment has provided me with profound insights into patient care, particularly during my battle with liposarcoma. This is a struggle I don’t often talk about publicly, but it’s crucial to address the importance of using personal experiences to enhance how we treat and train others in the medical field.

One thing I’ve learned is how vital it is to communicate effectively with patients. Not all medical professionals realize the impact of their words and attitudes. The way we address different views, perspectives, and personalities can significantly influence a patient’s experience. This becomes even more evident when dealing with patients who have unique communication needs, like the deaf patients who were around me. It’s not just about speaking louder or slower; it’s about truly understanding and respecting their method of communication.

One of the most significant challenges I faced was dealing with comments from peers like, “but you don’t look sick.” These remarks, though often well-intentioned, can be incredibly hurtful and invalidating. My sarcastic response often was, “well, you don’t look like a dumb ass,” which underscores the frustration of living with an invisible illness. It’s a reminder that illness doesn’t always have visible signs, and assumptions based on appearances can be deeply misleading.

In addition to these remarks, I encountered situations where medical staff unintentionally downplayed my symptoms because I didn’t fit the stereotypical image of a sick patient. There were times when my pain was dismissed or not taken seriously, leading to delays in receiving appropriate care. These experiences highlighted the importance of listening to patients and taking their concerns seriously, regardless of how they look on the outside.

Furthermore, the emotional and mental toll of undergoing treatment cannot be overstated. The constant hospital visits, the uncertainty of outcomes, and the side effects of treatments can be overwhelming. During these times, I found that empathetic communication from medical staff made a significant difference. Simple gestures, like a nurse taking the time to explain a procedure in detail or a doctor acknowledging my fears and anxieties, provided immense comfort and reassurance.

It’s not just cancer patients who face these challenges; many individuals with invisible illnesses, such as chronic pain, mental health disorders, and autoimmune diseases, experience similar struggles. The invisibility of their conditions often leads to misunderstandings and lack of empathy from those around them. For example, a patient with severe chronic migraines may look perfectly healthy, but their daily life is disrupted by excruciating pain and other symptoms. Similarly, someone with an autoimmune disease like lupus may have fluctuating symptoms that are hard to predict and manage, making their condition difficult for others to comprehend.

These experiences have profoundly reshaped my approach to medical innovation; medical policy development; how I act as a paramedic, teacher, mentor, instructor, patient advocate, or medical practitioner. As a patient, I’ve gained a deeper understanding of the need for empathy, clear communication, and personalized care. It’s through these challenges that I have learned to develop better treatment methods and train others to do the same. We need to teach future healthcare professionals that every patient’s experience is unique, and effective care goes beyond just medical treatments—it includes understanding and addressing the emotional and psychological needs of patients.

By sharing my journey, I hope to encourage my colleagues to reflect on their own practices and strive for greater compassion and understanding in their interactions with patients. It’s not just about curing illnesses; it’s about caring for people, and that starts with how we communicate and connect with those we serve. This holistic approach to patient care can lead to better health outcomes and a more supportive environment for those facing the daunting challenges of invisible illnesses.

In conclusion, my journey with this horrible disease has taught me invaluable lessons about the human side of medicine. I urge all healthcare professionals to consider the impact of their words and actions, to listen more intently, and to approach every patient with empathy and respect. Together, we can make a significant difference in the lives of those we serve, ensuring that every patient feels seen, heard, and cared for.