“Lived experience” is everywhere now. It’s in grant applications, on advisory boards, in the ethics section of protocols, in the acknowledgements of papers. After more than 15 years of arguing that patients know things, I should be pleased.
Mostly I am. But I’ve started to notice that when people use the term “lived experience,” they almost always mean one particular thing, and it isn’t the thing I think matters most.
Two meanings hiding in one word
In Swedish we have two words where English has one:
Upplevelse is what you live through. The episode. The night in the emergency department, the moment of diagnosis, the day the medication stopped working. It’s something that happens to you, what you HAVE experienced.
Erfarenhet is what accumulates. It’s what makes someone erfaren — experienced. It’s what’s left behind after you’ve lived through the same kind of thing enough times to know something about it, you ARE experienced.
German makes the same split (Erlebnis and Erfahrung). English collapses both into “experience,” and I have come to realise that the lack of nuance in the English language in this case is a problem.
Because when the health system says “patient with lived experience,” it almost always means the first one. What you have undergone. And when it says “an experienced clinician,” it means the second one. What you have become.
Same word. Opposite work.
The asymmetry
Think about how differently those two words function.
“An experienced neurologist” is a claim about authority. It’s why you want to see that particular doctor. It’s what seniority is made of. Nobody asks an experienced clinician to justify their experience; it is the justification. It’s understood to be knowledge — hard-won, cumulative, not fully writable-down, but knowledge.
“A patient with lived experience” is a claim about authenticity. It means this person will say something true and moving that will remind everyone in the room why the work matters. It is valued. It is also, almost always, epistemically inert. It goes in the quotes box. It does not go in the methods.
We have a whole category of authority for professionals who have accumulated experience, and no category at all for patients who have done the same thing.
What accumulates
I see my neurologist for about an hour a year. The rest of the year — all 8,765 hours of it — I am the one managing my Parkinson’s.
In those hours I’ve learned to split my medication doses in ways no protocol describes. I’ve learned to identify my pills by touch, because there are situations where looking isn’t possible. I worked out, over years and not in an afternoon, how to decide about a rollator — not whether one was clinically indicated, but what it would “cost” me and what it would give back. (If you want to know more about these examples, you can watch the video here)
That is not upplevelse. It isn’t a moving story about what it’s like to have Parkinson’s. It’s erfarenhet: knowledge built by paying attention, trying things, being wrong, adjusting, and trying again. It took decades. It is exactly the kind of thing we call expertise when a clinician does it.
And it’s the part that there is no category for in clinical practice. I can tell my neurologist how I feel. There is no slot in the consultation for what I have figured out.
This is not a swap
I want to be careful here, because this argument is easy to hear as “patient knowledge should replace clinical knowledge.” It shouldn’t, and it can’t.
My neurologist and I are both experienced. We are experienced of different things. He is experienced across many patients — hundreds (or maybe even thousands) of cases, seen briefly, which is what lets him recognise patterns between those patients. I am deeply experienced within one case — a single life, watched continuously for decades, which is what lets me notice things that never show up in an appointment. Neither of us can do the other’s job, and neither of our accumulations is a substitute for the other’s.
That’s the whole point. If patient knowledge were the same kind of thing as clinical knowledge, it would be a competitor. It isn’t, so it’s an addition. What I’m asking for isn’t a transfer of authority. It’s that the second accumulation be recognised as an accumulation at all.
One more thing I want to be careful about. Erfarenhet isn’t a reward for being methodical. It accumulates in anyone who lives with something long enough, whether or not they keep notes, whether or not they’d call it knowledge, whether or not they have the energy to experiment on themselves. What differs isn’t whether people become experienced. It’s whether anyone ever asks. Some people will need help articulating it. That’s a reason to build the slot in the consultation, not a reason to conclude the slot would go unused.
One more thing, from English
English lost the upplevelse vs erfarenhet distinction. But it kept something else, buried in the word itself.
“Experience” comes from the Latin experiri — to try, to test, to put to the proof. So do two other words: experiment, and expert.
An expert, literally, is one who has been put to the test.
By that measure I’ve been an expert on my own Parkinson’s for a very long time. Not because I’ve suffered — suffering isn’t expertise — but because I’ve spent years running small, careful, unglamorous experiments on the only case I have access to, and paying close attention to the results.
Chronic knowledge is chronic experience that has been allowed to accumulate. The question is if the healthcare system will be able to use it.
That question (and many more) is what the next few years are for. Chronic Knowledge is a project funded by the Swedish Research Council from 2026 to 2029, and the name is only half right. What we’re studying isn’t knowledge so much as the passage into it: how the episodes of a life with a long-term condition become something a person is experienced in, what helps or interrupts that, and whether the health system has anywhere to put the result.
