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Conversations with Rare Disease Patients: A Fine Line Between Sympathy and Empathy

Unlike more common chronic disease, we know first-hand that those living with rare diseases are dealing with far more isolation, sometimes more disability, and dramatically less support, which means we need to engage with them a bit differently. During a recent conversation with a new client, we were discussing how we approach conversations with rare disease patients – how we get them to open-up, be vulnerable, and have an honest, emotional discussion about life with a rare condition in a manner in which they won’t shut down.

At Egg Health, we use empathy as our guide allowing us to dig deep, gather rich insight, and ultimately illuminate the rare patient experiences our clients are eager to understand. Empathy lets us gain a more holistic perspective and understand everything that makes each “patient” human, before we lean into the context of the rare disease and it has affected their lives and sense of self. An empathy-led approach can take several forms, ranging from starting with a simple introductiory conversation, to talking about life before a diagnosis, to getting a feel for the macro and micro systems that influence this person’s life. All of this provides a foundation that leads to a more disease-centric discussion.

And while we always intend to lead with empathy, we may inevitably toe the line between sympathy and empathy. In these moments, we believe it’s important to draw the line. Sympathy is about our feelings, while empathy is about the respondent’s feelings and working to understand how they feel. We’ve learned that expressing sympathy in these conversations – while fair and human – isn’t the most effective approach. These patients want to share – they want to help, educate, and to be part of accelerating progress for them and their collective. Rather than being sympathetic, our job is to provide time and space for them to share their fears, sorrows, hopes, and optimism. Egg Health approaches these conversations as a partnership between two people working together to help fuel progress for their collective.

Conversations with our rare disease patients can be some of the toughest and most rewarding conversations we have here at Egg Strategy, so we wanted to share our top five tips for leading effective, empathetic conversations that leave everyone feeling good about the intention of the work, while also accomplishing our objectives.

1. Get to know the person first

We seek to understand each person in all of their complexity, not just the patient within the context of their rare disease so that we can genuinely get to know our subject and more intimately understand the extent of the disease’s impact on their life.

2. Communicate intentions from the beginning

This is incredibly important to setting the tone for the conversation and starting from a place of trust. Sharing intent, and more importantly why, helps breakdown initial insecurities around sharing intimate experiences. We demonstrate that vulnerability serves as the key to making a greater impact.

3. Setup a patient-led conversation

Our moderators guide the engagement, ensuring objectives are met and key areas of inquiry are explored, but it’s the patient’s story to share. We know that there is immense misunderstanding and many unproven hypotheses in the context of rare disease work. Even within one disease cohort, experiences can be vast. We allow for and encourage tangents and reflections we may not have planned for but may ultimately prove fruitful.

4. Showing flexibility comes in many forms

Whether it’s completely rethinking a sold approach, shifting the platform during engagement, adjusting interview times, or allowing the conversation to take a different shape and form, patient comfort and preferences always come first – we let them define their personal rules for engagement. The rare community may have unique needs, and we believe it’s important to acknowledge and support those needs as they arise.

5. Leave them knowing the important role they are playing in fueling progress

We make sure each patient walks away on a high note, knowing how valued their engagement and insights are to elevating each rare voice. Their willingness to be bravely vulnerable and open is helping fight for awareness, treatment, and support.