Why the Phrase “Lived Experience” Doesn’t Sit Well With Me

In the world of rare disease and chronic illness advocacy, certain phrases catch fire fast. They show up in research papers, nonprofit materials, conference presentations, and patient engagement efforts. Everyone starts using them. And somewhere along the way, nobody stops to ask whether they’re actually working.

One of those phrases is “lived experience.”

I’ve never liked it. And I think it’s worth saying why.

This isn’t about attacking well-meaning people. The people who use this term are usually trying to do something right — acknowledge that patients have real, hard-won insight into what it’s like to live with a disease. That intention matters. But intention and impact are not the same thing.

It’s just jargon. Let’s be honest about that.

All experience is lived. What’s the alternative — dead experience? The phrase is redundant, and it sounds like it belongs in a policy brief, not a conversation with a human being.

My friend just had a baby. When I see her, I’m going to ask what childbirth was like — not “what was your lived experience of giving birth?” That would sound absurd. So why do we talk to patients differently?

I have EGPA, a rare disease that affects roughly 2 in every million people. I’ve sat in rooms — professional rooms, advocacy rooms, research rooms — where people asked about my “lived experience” and couldn’t pronounce my disease’s name. There’s something quietly uncomfortable about that. The language signals respect. The unfamiliarity signals something else.

I will tell anyone anything about what it’s like to live with EGPA. But call it what it is: my life. My everyday experience. Not a category. Not a data point. Not my “lived experience.”

Why jargon is more damaging than it seems

Jargon doesn’t just sound awkward. It does something more insidious — it creates an in-group and an out-group. When professionals, researchers, and advocates adopt a shared vocabulary that patients didn’t ask for and don’t use themselves, it quietly reinforces a power imbalance. It says: we have a framework for you, and you fit inside it.

Language shapes how we think about people. When we medicalize or institutionalize the way we talk about patients, we start — often without realizing it — to see them through that lens too. The words become the filter.

“Lived experience” is far from the only offender. Take “empowering.” When an organization says a program empowers patients, it implies that power is something being handed down — granted by someone with more of it. But people living with serious illness don’t receive power from an institution. They find it themselves, slowly, painfully, through fear and hard decisions and learning to advocate in rooms that weren’t built for them.

Or consider the advice constantly directed at care partners: “practice self-care.” Of course they know they need to care for themselves. But when someone is holding a household together while their person is critically ill, hearing that phrase — again — can feel less like encouragement and more like a quiet accusation. As if they are failing at something they already know is important and simply cannot get to right now.

These phrases share a common flaw: they sound thoughtful while missing the actual human reality underneath.

When the phrase creates distance instead of connection

When someone says they want to “incorporate lived experience,” patients can start to feel like they’re being placed in a box — something to be analyzed, summarized, and cited. But people navigating serious illness are not case studies. We are making real decisions about medications, building care teams, coping with uncertainty, and figuring out how to live with something most people around us have never heard of.

Our stories are not data points. They are our lives.

There’s also a performative quality to the phrase that deserves naming. Organizations sometimes use it as a signal that they value patients — without the deeper listening to back it up. Language alone doesn’t create respect. Real respect shows up when clinicians actually listen, when researchers ask meaningful questions, and when patients are involved in real decisions rather than symbolic ones.

If your organization uses the phrase “lived experience” regularly, I’d ask a simple question: what changed because of it? Were patients in the room when decisions were made? Did their input shift the outcome? If the answer is mostly no, the phrase may be doing more work to signal values than to actually live them.

What I’d rather hear instead

Simpler questions work better:

• What has your experience been like?
• What have you been through?
• What’s your story?

These invite conversation. They see the person, not the patient. They don’t require anyone to fit inside a framework someone else built.

I’m not asking anyone to feel criticized. Most people who use this phrase genuinely mean well. But I do think it’s worth pausing and asking: does the language we use actually bring us closer to patients — or does it sometimes quietly push us apart?

Language evolves through conversation. And sometimes the best way to improve it is simply to be willing to question it — even when it’s already widely accepted, even when it feels safe.

I’d rather find out by talking about it.