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A patient's perspective

Raising awareness -- one medical student at a time

“Her story and many experiences with physicians will serve as a guide to help make me a more empathic and humble physician.”

“You remind us that being a physician is more than merely diagnosing and treating illness; it is about seeing and understanding the patient as a person.”

“It is easy to get caught up on the mechanisms of disease and treatment, and lose track of the person being treated. Being a doctor isn’t just about providing the best medication. It is also about building a trusting and respectful bond with the patient. This can only be done if a doctor listens to their patient, acknowledges the patient's fears and concerns, and is willing to educate themselves about the patient’s condition.”

These are just a few of the comments first-year medical students made after Ellen, a mitochondrial disease patient, spoke to their class at Boston University School of Medicine recently.

Karen Symes, PhD, Assistant Dean of Student Affairs and Associate Professor of Biochemistry, reached out to MitoAction seeking a mitochondrial disease patient to speak to her class. Ellen was happy to oblige.

Karen told her students before Ellen took the mic, “What you say can have a huge impact on your patient.”

Ellen’s most powerful statements came as she recounted the day she was going through a very rough procedure necessitated by her mitochondrial disease. She was quite uncomfortable by the process but her doctors and nurses were focused on the process and may not have noticed.

Until someone asked her, “Can I hold your hand?”

That simple question -- and gesture -- meant everything to Ellen.

“You can’t take care of someone until you learn to hold their hand,” one student said after the class. “That statement really resonated with me. In the midst of the hustle and bustle of medical school, it brought me back to the main reason I decided to become a doctor. And it illuminated the fact that a doctor is only as good as his or her relationship with their patients.”

“She taught us how powerful it is to offer to hold a patient’s hand,” another student said. “[It was] a lesson that wetted more eyes in the audience than one would expect. I will carry these lessons with me and will hopefully be the type of physician a patient like Ellen can look forward to being treated by.”

With her service dog, Ricky, by her side, Ellen shared her experience as a patient and as a person dealing with mitochondrial disease.

“It’s important to cultivate and maintain compassion,” Ellen said. “Don’t lose sight of wanting to help people. I hope what you hear today stays with you as you go about your careers.”

Ten years ago, Ellen got seriously ill. Nine years ago she was diagnosed with mitochondrial disease. “The whole process was bewildering and terrifying,” she said. “So a connection with a doctor who is helping you is so vitally important.”

“What I never really thought about was how the patient-doctor relationship and interaction can make or break a patient’s entire day, week, maybe even month/year,” wrote a student. “From the patient’s experience, I saw the importance of professionalism within the healthcare realm, as well as the impact that showing care and empathy can have on an individual and their care.”

Ellen mentioned that not many people know about Mito and in the past they didn’t teach it in medical schools. “There’s more awareness now,” she said. “Hopefully you will learn more about mitochondrial disease and what it’s like to be a patient with the illness.”

And she warned the class, “If you Google it (Mito), that’s fine, but don’t tell the patient that.”

One of Ellen’s doctors apologized to her for not knowing more about the disease. “It meant so much to me that she apologized.” That doctor, whom Ellen still sees, learned more about the disease.

“It’s OK to not know things,” Ellen said. “As a patient, I respect when a doctor says, ‘I don’t know about this, but I will learn more.’”

“She taught us how important it is to acknowledge patients as people and show them that we are trustworthy and sticking by them, even if we don’t always know the answer,” a student wrote.

Ellen then recalled one doctor who acknowledged that she didn’t know mitochondrial disease and how it affected the heart. “And she left it at that,” Ellen said “She never said, ‘We’ll learn together’ or ‘I’ll talk to someone else.’”

So, Ellen’s advice to the students: “Don’t be afraid to say, ‘I don’t know but I’ll be here for you and with you as we share this journey together.’

“Be curious. Be compassionate. Sometimes it’s not fixable and the most important thing is to be.”

“As I listened to Ellen telling her story today, I was struck by her resilience despite everything she has been through,” wrote one student. “After a year of being diagnosed with a myriad of diseases with no identifiable common factor, encountering insensitive healthcare professionals, and having her conditions wreak havoc on her body, she still had the willpower to act selflessly: she is an advocate for her community of people with mitochondrial disease and still found the time to impart wisdom on our class of rookie medical students.

“Because of her, I will try my hardest to communicate well with my patients, collaborate with them so they will be in the know, be alert to their sensitivities, and apologize when I make a mistake. In the future, I hope to encounter patients with the same resilience as Ellen.”

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