When talking with patients, we should use language that creates connection

In the world of rare disease and chronic illness advocacy, certain phrases catch on quickly. They appear in research papers, nonprofit materials, conference presentations, and patient engagement efforts. One phrase I hear constantly is “lived experience.”

To be honest, I’ve never liked it.

This may sound like a small thing. Most people who use the term mean well — they’re trying to acknowledge that patients offer important insights into what it’s actually like to live with a disease like ANCA-associated vasculitis. The intention is usually respectful.

But language matters. Sometimes, the words we choose create distance rather than connection.

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One reason the phrase bothers me is that it feels unnecessarily complicated. All experience is lived. “Lived experience” sounds like padded, institutional language.

No one asks a woman who has just given birth, “What was your lived experience of childbirth?” That would sound odd. People simply ask, “How was it when you gave birth?” Why is illness any different?

That difference might seem subtle, but it matters. One question sounds like a conversation between humans. The other sounds like it belongs in a research paper or policy document. When we’re talking about illness, fear, survival, and uncertainty, plain language communicates more respect than jargon ever could.

Another reason the phrase bothers me is that it can unintentionally turn people into categories. When someone says they want to “incorporate lived experience,” it can sound like patients are being placed into a box — something to be analyzed or summarized.

But people living with ANCA vasculitis are not just case studies. We’re people navigating a complicated, frightening disease, making difficult decisions, coping with uncertainty, and figuring out how to live with something most people have never heard of. Our stories are not data points — they are our lives.

Inviting conversation

Another issue is that the phrase is often used as a signal that an organization values patients. In theory, that’s good. But when the phrase is repeated without real listening, it starts to feel performative. Language alone does not create respect. Real respect shows up when clinicians listen carefully, researchers ask meaningful questions, and institutions involve patients in real decisions.

Anyone who has interacted with me or read my columns knows I’m picky about language. That’s intentional. Words shape how we think about people.

For example, I’m not a fan of “empowering” or “empowerment” to describe services or tools for patients. When someone says a program empowers people, it unintentionally suggests that power is something being given to them by someone else.

But people living with serious illness don’t receive power from someone else — they find it within themselves. They wrestle with fear, uncertainty, and difficult decisions. They discover their own courage over time. That process is deeply personal and often very hard.

The same thing happens with advice often directed at care partners: “Practice self-care.” Of course care partners know they need to care for themselves. But when someone is caring for a very sick person, that’s often extremely difficult. Hearing that advice repeatedly can feel dismissive or even shaming.

For me, “lived experience” falls into the same category. It sounds thoughtful, but it can miss the deeper reality.

In most situations, I think simpler language works better. Instead of “lived experience,” we can ask: What has your experience been like? What have you been through? What has your personal journey with this disease been? What’s your story?

These questions invite conversation, recognize the person behind the illness, and don’t turn someone’s life into a label.

This isn’t about criticizing people who use the phrase. Most who say it genuinely want to respect patients. But it’s worth asking whether our language brings us closer to patients — or sometimes creates distance.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.