Making the argument (again) that we should scrap ‘lived experience’

Back in March, I wrote about why I’ve never liked the phrase “lived experience.” The short version: Plain words connect better than institutional ones. If you want to know what someone’s life is like, just ask how it’s going. And there’s really no such thing as a “lived experience.” Aren’t all experiences lived? If they weren’t, they would be “dead experiences.” I haven’t seen that panel on any agenda yet!

To my dismay, the phrase seems to have only multiplied since then. I’ve seen it on nearly every conference agenda I’ve opened, in grant applications, in job postings for “lived experience advisers,” on patient engagement slides — sometimes three times on a single slide. It has become the way to say someone lives with a disease and knows something about it.

So I’m coming back to it and asking seriously, can we please drop it?

The part that bothers me is what the phrase does to the room. Watch how it gets used. Really watch. Clinicians, researchers, and policymakers bring “expertise.” We patients bring “lived experience.” One sounds like knowledge, while the other sounds like a feeling we’ve agreed to share. A doctor gives the keynote, and the patient tells a “personal story” right before lunch.

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When we patients are working this hard to have our reality recognized as equally important as the clinical view, language matters.

Here’s the thing: Living with eosinophilic granulomatosis with polyangiitis every day has made me an expert. In fact, as I write this, I have exactly 58,281 hours, 40 minutes, and 32 seconds of real experience. I guarantee that is more than any doctor. I know how my body signals a flare before my labs do. I know which insurance appeals work and which go nowhere. And I’ve sat across from more than one doctor who had never treated someone with my disease and realized I was the most informed person in the room.

That isn’t a soft add-on to the “real” data. That is data.

What we actually bring

When I wrote about the value of a second medical opinion, I talked about how many doctors don’t know about the newest treatments for our disease. Who often tells them? We do, and that is OK. We are an essential part of the equation. We read the trial results, compare notes across online communities with thousands of members, and bring the article to the appointment.

Our community knows things no single clinic could: how a medication actually feels at six months, which side effects people stop mentioning, and which questions never get asked in a 15-minute appointment. When we call that “lived experience,” we shrink it.

Where it came from

This may not be the true origin story, but I’ll share it anyway because I think it’s valuable. One of our pharmaceutical partners told me the phrase started inside their company as a way to separate medical, compliance-focused data from real-world data. In that context, it makes so much sense. Compliance and legal language (which keeps people out of orange jumpsuits) often doesn’t line up with our reality.

So keep using it internally! But please, don’t use it externally. And don’t use it in any other context or industry. I have yet to hear a valid use for it in other industries, though I’m open to hearing an argument that makes the case!

I know the phrase came from a good place — a push to make sure people living with a condition have a seat at the table. Thank you for that. And yes, we need more of it. But a seat at the table isn’t enough if what you bring gets labeled as something less than what everyone else brings.

So here’s my ask:

• Call us what we are: people living with ANCA vasculitis, care partners, and community experts.
• Put us on the agenda to talk about our real-world experience data, not only our stories.
• Bring us in when plans are being made, not after decisions are done.
• See us as holding half of the data needed for treatment decisions, because how a treatment affects our quality of life matters more than it gets credit for.
• And when you want to know what it’s like, just ask. “What’s your experience?” works fine.

In March, I asked for language that creates connection. Today, I’m asking for language that tells the truth about what we know.

Our experience is alive and well, thank you very much. And it’s called expertise.

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.