- Issue 2From Awareness to Partnership
- Issue 3Origins — with Penney Cowan
- Issue 4Awareness That Moves Research
- Issue 5Awareness Isn’t Action
- Issue 6The Ecosystem of Observances
- Issue 7Carrying September ForwardYou are here
Six issues for the month, numbered straight on. Issue 1 came out in June; Issue 8 follows in December, and the newsletter returns to quarterly.
On October 1, somebody in every hospital and health department in the country takes down a poster. The proclamation expires. The phrase “Pain Awareness Month” goes back in the drawer for eleven months. Nobody marks the moment.
This issue’s focus — Carrying September Forward. Five issues have circled one claim, and this one says it plainly: awareness was never the goal. Awareness is the front door. Past it is a building most of us were never handed a map of — audience, speaker, seat, vote, and the rare room where a person with pain sets the question. This issue is the map, and the people already inside: a Board Certified Patient Advocate who built a practice on believing people no one else would, a Duke researcher whose whole career started with questions his patients asked, a letter to the clinicians joining a working community where nobody is anyone’s patient, and the doors still open before the year ends.
The posters come down on schedule. What carries forward is us.
Meet a Fellow PWLE
Getting to Know Rebecca Share-Howard
She built a career on believing patients no one else would. Now she’s discovering the rooms where healthcare itself gets shaped — and that she won’t be walking in alone.
At ten she was in a pediatric pain clinic, unable to sit up. At eighteen a spinal fusion left her with the back pain four surgeons never mentioned, and a surgeon who told her she “seemed mad.” Twenty years on, her pain still has no single name, and she has made that the point: “The absence of a clear diagnosis is not the absence of a disease.” Now a Board Certified Patient Advocate, she is building a practice for the people the system calls too complex — and finding the second kind of table, where research and policy get shaped. With an editor’s note on three shared connections.
From the Editor
Carrying September Forward
The ribbons come down October 1. Here’s what doesn’t.
Awareness was never the goal. Awareness is the front door. Past it is a ladder nobody hands you a map of: Audience, Speaker, Seat, Vote, and the rare rung where a person with pain calls the meeting. Most engagement programs quietly stop at Speaker, where a voice can be recorded and thanked without ever being consulted again. This is the full map, why nobody climbs it alone, and the smallest concrete step toward the next rung — in the flattest, least ceremonial terms the editor can manage.
Partner in Practice
The Patients’ Questions
A physical therapist turned Duke pain researcher on the questions that built his career — none of which were his — and what it takes to earn a place on the playing field.
Steven Z. George became a researcher because the people in his Pittsburgh clinic asked questions he couldn’t answer, and the literature couldn’t either. Twenty-five years later he is honest about what the science offers — smaller victories, not less important ones — and about the currency problem: researchers earn their seat with grants and papers, and patient partners don’t have that currency yet. His advice to a researcher facing a patient panel for the first time: it’s like defending your dissertation again. “They don’t care who you are. They just want better care for their back.” With an editor’s note on a paid seat on one of his trials.
Birthdays · New This Issue
Many Happy Returns
Starting now, every quarterly issue carries the birthdays in our community for the three months ahead — with each person’s permission, and nothing more than a name and a day.
A newsletter about people should know when they were born. Beginning with this issue, each quarterly issue of PWLE Voices lists the birthdays falling in the coming quarter for people in the National Pain K12 lived-experience and researcher community who have told us in writing that they want to be listed. First name or display name, month and day, no year. If you would like yours included — or taken off — write to editorpwlevoices@gmail.com; one line is enough.
October to December
Corben P. — November 14
Shanna K. — December 9
Rob E. — December 26
Where this list comes from: a birthday sign-up run by the NIH HEAL National Pain K12 program, whose advisory committee pays me an honorarium per meeting. Every name here gave written permission to appear. — Tom
Tools & Resources
What Kind of Trial Is This?
A plain-language guide to the study designs a person with lived experience is most likely to be handed — and the question each one opens.
Somebody sends you a sixty-page protocol and the call is in nine days. You cannot say anything useful about a study until you know what kind of study it is — not the topic, the shape. This is a field guide to shapes: interventional or observational, which of seven purposes, phases and when there are none, how people are assigned, what the new thing is measured against, who is kept from knowing, and the fork that matters most to us, explanatory or pragmatic. It ends with the six places a person with lived experience changes a study rather than decorating it.
Worth a Listen · Installment Three · A Continuing Article
When the Credential and the Diagnosis Sit in the Same Person
Two fibromyalgia shows made by people who have it. One host is a coach. One is a doctor. Nobody in the room has to translate.
The first two installments sorted podcasts by who holds the microphone. This one breaks the sorting on purpose. Fibromyalgia Podcast is hosted by a health coach who has the diagnosis; The Fibro Show by a physician who developed it in medical school and a coach who has led a support group for nearly thirty years. What to listen for is the moment one host answers as a clinician and the other as a person with the symptom, and then they trade places. Where to start, what the commercial layer is on each, and which one comes with captions. With an editor’s note on a host profiled in Issue 4.
From the Field · Community of Practice
In This Room, I Am Not Your Patient
A note for clinicians joining the United States Association for the Study of Pain (USASP) Community of Practice, from a person with pain who will be sitting in the next chair — and a second letter, from the other side of the same table.
The clinician walked in, glanced at what the aide had written down, and started. He did not ask whether the person in the gown agreed with what came next, or understood it. Two letters about that room, published side by side. The first asks the clinicians joining the Community of Practice to leave one habit at the clinic door: ask what I work on before what I have, explain the word and keep going, hear the point before you reach for a plan, and argue with me. The second asks the people who will sit in my chair to do their half — because he did not ask, and I did not tell him he had not asked. With how to join, and five things to try at your first session. With an editor’s note on the USASP seats that make this a program he helped start.
Open Calls
The Rest of the Year
Every place we know of where your experience is being asked for between now and the next issue.
The comment window on NIH’s draft policy for returning study results to participants is still open until October 26, and three of its questions are addressed to participants rather than researchers. PCORI’s advisory panels open in November. And the calls that don’t close — merit review, study partnerships, the standing seats that need a person with pain in them. Verified the week this issue published; if a date has moved, tell us.
Better Together Recognitions
Nominations Close October 31
Recognition is how a community records what it values. This is the last issue before the window shuts.
Better Together Recognitions honors the people who make real partnership possible, on every side of the table. Four recognitions are open: The Expertise of Experience, for a person with lived experience; The True Partner, for a researcher; The Open Door, for an advocate or ally; and The Chair Beside, for a care partner. Recipients are chosen by a rotating panel of people with lived experience; the co-chairs convene the process but do not choose. Anyone may nominate — including yourself. Self-nominations are welcome and are weighed by the PWLE selection panel on the same terms as any other nomination. If you saw work that mattered, that is enough reason to fill out the form.
Prefer not to use a form? Email your answers to the same questions at editorpwlevoices@gmail.com, or ask a co-chair to take your nomination by phone.
→ Nominate someone · → About the program
I co-chair this program with Laura VanAntwerp. Neither of us sits on the selection panel or votes. — Tom
Meet a Fellow PWLE (Featured) — Getting to Know Rebecca Share-Howard
chronicpainla.com/getting-to-know-rebecca-share-howard
From the Editor — Carrying September Forward
chronicpainla.com/carrying-september-forward
Partner in Practice — The Patients’ Questions
chronicpainla.com/the-patients-questions
Tools & Resources — What Kind of Trial Is This?
chronicpainla.com/what-kind-of-trial-is-this
Worth a Listen, Installment Three — When the Credential and the Diagnosis Sit in the Same Person
chronicpainla.com/when-the-credential-and-the-diagnosis-sit-in-the-same-person
From the Field — In This Room, I Am Not Your Patient · I Am Not a Patient
chronicpainla.com/in-this-room-i-am-not-your-patient · chronicpainla.com/i-am-not-a-patient
Open Calls — The Rest of the Year
chronicpainla.com/the-rest-of-the-year
Birthdays — Many Happy Returns (Stay Connected, on this page)
Better Together Recognitions — Nominate someone (closes October 31)
chronicpainla.com/nominate
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Featured pieces and contributor pieces are reviewed and approved by the named contributors before publication — and every contributor is offered the whole issue to edit, not just their own piece. Final editorial responsibility rests with the editor. The editorial pieces in this issue name the Patient-Centered Outcomes Research Institute, the National Institutes of Health, and the United States Association for the Study of Pain; the editor’s paid and unpaid roles with each are disclosed at the top of the article where that organization appears, and in the standing disclaimer on every article. Worth a Listen reviews a show co-hosted by Sharon Waldrop, who was profiled in Issue 4; that connection is disclosed at the top of the installment.