I have told this story more than once, and I am going to tell it again here, because it belongs at the front of this piece.

Some years ago I asked whether a person with pain could come to a scientific meeting. Whether someone like me could belong to a society built for researchers and clinicians.

Brit Knight said sure.

That is all it took. One person with the authority to open a door, and the instinct to open it.

It was, as I have written before, like finding my tribe.

We sat down over Zoom in late July for eighty minutes, and I asked her to start at the beginning.

Beginnings

She began by telling me something I did not know. “I am a little bit of a loner, Tom,” she said. “I do not know if you know that.”

She is the older of two. Her sister Victoria is three years behind her, and Knight describes the two of them as bonded permanently — but she is careful to say that the closeness was worked at rather than inherited. “Me working on me,” she said, “and then opening it up so she could open up too, instead of bottling it down.”

Her biological father had an alcohol problem and was mostly absent, on the every-other-weekend arrangement that he did not keep. She ended the relationship in ninth grade, and calls it one of the hardest things she has done. The guilt outlasted the decision by years. “I did not realize I was holding on to all that guilt until a couple of years ago,” she said, “when I finally had to ask myself why I was holding it so tight, and what it was costing me.”

She is close to her mother, though that took its own reckoning. “He has not been in my life for twenty years, and you have,” she remembers concluding.

What she did with all of it, at the time, was school. “I poured myself into it. I love to learn.” She went in as a psychology major, wanting to understand why people do what they do, and by her mother’s account she was fine within the first week — no separation anxiety, nothing to work through. Finally alone to do her own thing.

Three books a day, and a paint set

She reads at three different times of day now, and the subjects do not overlap. Professional development in the morning. History in the afternoon or evening — when we spoke, the First World War and the Lusitania. Fantasy at night, because it is lighter.

This is a recent freedom. “Now that I am not tied to PubMed,” she said, “I have this lovely, intentional reading list.”

She is also working through paint by numbers, deliberately. “It is a slow task for my brain. Slowing the nervous system down, regulating it.” She had finished one the night before we spoke.

None of which she came by naturally. “Oh, I did not like to read,” she said. “I hated reading growing up.” The fantasy series she is rereading now she last touched in high school, when reading became a way out. “Fantasy was so far removed from reality that it was a nice, fluffy thing to escape to.”

There is a piece of her Zoom background worth reporting. The art behind her is her mother’s, painted in high school and rescued from the trash. She keeps a dinosaur back there too.

“I thought really hard about the T. rex, because I figured people are going to judge me,” she said. “And then I thought, let them judge me. I like it.”

The professor who would not sugarcoat it

I asked her to name the one thing that caused her to bloom. She named a few professors who gave her space, and then named the obstacle underneath: “overcoming the hurdle of feeling inadequate, and fear.”

Dr. Jennifer Taylor was the psychology professor who told her she would need organic chemistry if she wanted to do anything in neuroscience, and was firm about it. Knight’s first answer was that she could not do that.

She did it, and liked it. “It was the I-see-you, but I am not going to sugarcoat it.”

She graduated with a bachelor of science in psychology and a minor in biology, from a state school because it was cheaper. As a psychology student she was almost never in the psychology building — only for class. She lived in the biology building instead, where the hardcore majors would tell her to get out.

Her school had no labs. She did not know what a lab looked like until she reached the University of Connecticut, so she went looking for summer research: first a cognitive touch-matching lab that someone from her childhood church connected her to, then a dolphin population study in the Gulf after Katrina. That one taught her what she did not want. The animal work was not challenging enough.

The same summer, a visiting professor had a small neuroscience lab, there only temporarily. She emailed to ask if he could take her. He said he was already full.

“And I said, no. I need you to take me. There are no other options.”

He took her. She credits that lab with getting her to Connecticut.

Her doctorate is in biomedical science, an umbrella programme requiring three lab rotations before choosing a dissertation home. She started in 2014, the same year Kyle Baumbauer started his lab and was still unpacking boxes and not yet taking students.

She joined anyway, and that is how she found pain. “I did not even know that was something people studied,” she said. What held her was the systems approach — behaviour and biology together. “It married the things I wanted to do.”

I told her I was medically retired from the Air Force in 1993 for intractable pain, and that nobody then knew what it was or why. Everything she was describing is, from where I sit, brand new.

“This is a Brit job”

She finished the doctorate. Her advisor moved institutions. She was not sure she wanted academia at all, took herself to Rhode Island for a couple of days, and decided to do the postdoc anyway, feeling beaten and exhausted.

Then the pandemic. A year at home. Going back to the lab afterward was worse than staying away. “All of a sudden it felt restricting. No flexibility, no opportunity to branch out. I was back in the silo.”

She was still on an old email distribution list from her advisor’s time when Linda Watkins sent word that a new organisation had been founded.

Knight knew the landscape it was replacing. She had been part of the American Pain Society as a graduate student, on the outside of it. “Being a graduate student felt like nobody gave a damn about you. You did not exist. You go to these conferences and no one sees you.” Unless you knew someone, she said, you were there to give your talk and maybe show your poster to one or two people who happened to walk by.

She was at the meeting where that society announced it was closing. Later, an email came across about USASP looking for a full-time programme coordinator.

“I printed out the job description. I said, this is a Brit job.”

When they hired her, the special interest groups were only getting off the ground and there were few committees. She was building from the beginning and then building on top of that. Then came an annual meeting she had never run before — four hundred people, hybrid, post-pandemic, vaccination cards checked at the door.

They promoted her to director of operations within a year, she thinks because she was doing more than the job description contained. Executive director came up occasionally, but felt distant.

About eighteen months ago the board decided to hire an interim executive director to train her. She was still asking whether she was the right fit, and did not entirely know what the question meant. He worked with her. She read, because she needs to read.

And the question stopped being whether somebody better could do it.

“It is me. There are lots of reasons, and I can name them.”

A seat at every table

Asked what has changed since she started, she describes the difference between assembling a vehicle and steering one. “Before, we were still putting the wheels under the car. The infrastructure.” Now the growth can be intentional, built on those pillars with the buy-in of the people who drive the society. Incremental, she stresses.

The harder part is cultural. She has been shifting the board away from being a working board down in the weeds and toward the long view, and says she is still working at it.

On how a scientific society came to believe people with lived experience belong at the table, her answer is administrative and, I think, more useful for it. It was one of the earliest strategic directions the board set — around 2020. That created a PWLE engagement task force, and the task force produced a list of what could be done immediately and what would take longer.

“There was low-hanging fruit, and we love that, because that gets it going,” she said. “USASP is not attached to perfection. We are about, let us get it going, and then edit or fix or tweak and get feedback. It is better to start than to wait.”

I asked whether she met much resistance.

“No.”

What it looks like now is a seat at every table of conversation, starting with the scientific programme committee. What she wants next is communications at the annual meeting, and the talks, and better recognition on the posters, where she says what exists is not enough.

“People with lived experience at the tables give us perspective that we often forget when we are siloed in our own talk, our own precision of language,” she said. “Sometimes it is a hindrance. It gets a little too sterile.”

Say it so people understand it

This is where the conversation turned, because it is the thing I write about constantly, and it turns out she has been chewing the same bone.

“People do not understand each other’s words. That is what it is,” she said. Everyone would benefit, she argues, if the room simply backed up and acknowledged that people do not know what is being said. So why not explain yourself a little better?

“And if you do not know how to do that, then you probably do not really know what you are talking about.”

She wants more plain-language text, and is realistic that no one will deliver a whole talk that way. So: a session, or a dedicated space, that is only in plain language. Protect a piece of the afternoon and invite the community in.

“That is mutually beneficial, and especially good for students,” she said. “Then you come back to your why. And you get feedback from people who see your research in a totally different way and ask you questions you never would have thought of.”

On posters she draws from ten years of helping judge a high school science fair. Sometimes she looks up and finds the same thing she sees at professional meetings: a wall of text.

“It is about the message. What is it you want people to walk away with? You have to start there and walk backwards.” The detail can live elsewhere; there are QR codes now.

We agreed on the diagnosis. I told her I am tired of scatter plots that do not answer the only question that matters, which is what it means. She pointed out that a good deal of that is the principal investigator’s prerogative, but that best practice filters down over time.

I raised the seventeen years it takes for a clinical trial result to reach a person like me, and made my case for the informed consumer: if I know a therapy exists, I can walk into the appointment and ask for it. Right now the burden sits with me, and often the physician does not know either. A double-barrelled problem.

I told her about taking one of Steve George’s trials and turning his patient-friendly summary into an infographic, and how that landed. Anybody can understand a picture.

“It is really elegant when things can be that simple,” she said. “Bringing your message down to a picture is another one of those tests. Do you understand what you are doing? Do you understand what your work means? Can you even explain it? Because if you cannot draw it — some dissertations used to require people to draw their mechanisms out on the board.”

The community of practice, and the half that is missing

I asked whether she sees USASP setting the pattern for other organisations on engagement. She would not claim it.

“Honestly, I do not know what everyone else is doing. But I would love to work with other people. I do not want to feel like we are competing, although that is kind of how people view things.”

She has less patience for one particular objection. “I hear people say they do not know how to find people. It is sort of an excuse, and it is not good enough.”

The community of practice is the structure she is encouraging. It is also, by her own account, incomplete — and she names the gap rather than waiting to be asked about it. Funding.

“It is not good enough for me to say you should be doing that and then not have funding people can apply for.”

“Otherwise it feels like I am missing the other half.”

She is also considering splitting the engagement committee into subgroups, partly so the people carrying the work are not overburdened, with each group co-led by a person with lived experience and a researcher or clinician. Six times a year, she suggested. Roundtables rather than presentations — someone brings something, and people look at it.

The question I ask everybody

I told her about the long game. That I am trying to grow my replacements, about a dozen so far, and that I do not want any of them doing exactly what I do. I want them following their own path.

So who is her replacement? She did not have to name a name.

“I do not know. I do not know.”

She could name some of the things that person would need. She can see it when it does not show up. “There are some things you just cannot have in this chair.”

Make pain visible

At the end I asked what we had not covered. She had an answer ready, and it was the future.

“Something that has become apparent is that pain, ironically enough, is not visible enough,” she said. She thinks about how cancer entered public consciousness, and about what came before it. People see a survey about pain research, she said, and respond that they did not know anyone studied that.

How to change it is not a question she thinks has one answer, or one person. “It is not going to be just me. It has to be everyone, and not everyone can do all the things.” She described it as dripping from lots of different directions.

“But people know when they are being seen. People are devoting their lives to this.”

What she means by visibility is specific: pain visible to the public as its own thing, not as symptoms, not folded into everything else.

I told her my idea of the future is everybody working together, and asked for hers.

“All hands on deck. Everyone is invited. Everyone is welcome.”

And she wanted to discourage one feeling in particular — the sense that this is not for you because you do not go to one of those specialist pain centres.

“You still matter.”

What I keep coming back to

A psychology student who was told to get out of the biology building now runs a scientific society. A graduate student who felt invisible at conferences now spends her working life making sure other people are seen.

That is not an accident. It is the same instinct, showing up again and again.

She knows what it costs to be in the room and not be counted.

That is why she keeps opening the door.

Brit, I said it on the call and I will say it in print. I respect you. I appreciate you. You are a bright spot.

And to everybody reading this who has ever wondered whether they belong in a room like that one:

Somebody will say yes. Go find them.