- Issue 2From Awareness to Partnership
- Issue 3Origins — with Penney Cowan
- Issue 4Awareness That Moves Research
- Issue 5Awareness Isn’t Action
- Issue 6The Ecosystem of ObservancesYou are here
- Issue 7Carrying September Forward
Six issues this month, numbered straight on. Issue 1 came out in June; Issue 8 follows in the fall.
Every September, the pain community marks Pain Awareness Month — a month for making invisible pain visible. PWLE Voices is marking it with six issues across the month: one community, many conditions, better together.
This issue’s focus — The Ecosystem of Observances. September is not ours alone. It is also Sickle Cell Awareness Month, Rheumatic Disease Awareness Month, PCOS Awareness Month, National Recovery Month, and more besides. Roughly two hundred health observances share the American calendar, and nobody is in charge of the list. Sickle cell’s September was asked for by the Congressional Black Caucus and proclaimed by President Reagan in 1983. Pain’s September was never granted by anyone in Washington; a coalition took it in 2001 and the states kept saying yes.
The pattern runs past the calendar. Nobody hands out the words for the chair a person with lived experience sits in, so four countries built four. Nobody hands us the form that records what we carry into a research room, so we say it first. Every piece in this issue is about something that exists because somebody insisted.
Every observance on that calendar was built by somebody — most of them by people with the condition, filing the same request year after year because there is no permanent place to file it.
Meet a Fellow PWLE
“Somebody Needs to Do Something”
A fall at work took the job Saira Maria Loza loved, and pointed her toward the rooms where she could speak for the patients she watched go unheard.
A 2010 fall at work, and a workers’ comp system that kept sending her back too soon, ended the retail career Saira Maria Loza loved and took the identity she’d built with it. Bilingual and raised by Mexican parents, she found her way back through advocacy: Michele Rice pulled her into a support group, and an online training led her to a seat on the California Advocacy Team. Her verdict on working as a team: “When there’s more, there’s more power.” With an editor’s note on a shared seat on that team.
Meet a Fellow PWLE
Getting to Know Virginia McIntyre
She kept her head down for nearly a decade. Then a stranger in a conference room told her what she had done.
Meet Virginia McIntyre over the back fence and she will not tell you she lives with pain. A workplace injury in 2008 and nearly a decade of keeping her head down. Then, at a 2017 conference in Halifax, a young woman she had just met told her she had made it. She went home and built the People in Pain Network from nothing, one peer-support group at a time, and now chairs the Canadian Pain Society’s lived experience committee. From Nova Scotia, what she would change about research tables on both sides of the border. With an editor’s note on a shared USASP connection.
Tools & Resources
The Word Changes at the Border
Nobody is in charge of the vocabulary either. Four countries, four names for the same chair — and knowing which one you are being offered tells you what you are actually being asked to do.
The first time I heard someone say “involvement” instead of “engagement,” I assumed it was a British accent doing what British accents do to American words. It was not. It was a different job. The United States says engagement, the United Kingdom says involvement, Canada says patient-oriented research and Australia says consumer — and the British split three words we use interchangeably, in a way that makes the word American practice is built around mean something closer to publicity. Four questions that work in any dialect, and what each name is really claiming.
Tools & Resources
Say It First
Every observance on the calendar has money behind it, and there is no public place to look. Investigators have a federal rule for conflicts of interest. People with lived experience mostly do not.
Every investigator on a federally funded study fills out a form about money. Most people with lived experience never see it, because the rule that requires it was written for a job title we are rarely given. The public registry of drug-company payments skips us too, and so do the funders behind the awareness calendar. What the rule actually says, why it counts a different kind of money than the kind most of us are paid, how one funder defines a conflict more broadly than dollars, and the sentence to say before anyone asks. It is also why every article here opens with a disclosure.
Research Update
Who Gets a Month?
Nobody is in charge of the awareness calendar. September belongs to pain because a coalition took it — not because anyone in Washington voted.
Congress has been asked to designate Pain Awareness Month once. The resolution was introduced on September 30, 2020 — the day before the month it was designating ended — and never received a vote. In that same September, the PCOS Awareness Month resolution carried a hundred and twenty-four cosponsors. September exists for pain because California, Louisiana and a string of governors kept saying so, and because federal agencies observe a month Congress never granted. Also here: what it would actually take to change that, drawn from the one health observance resolution that passed.
Open Calls
Ask in the Spring
Four places your experience is being asked for. One closes next month, one opens in five weeks, one is open every day of the year, and one you have to remember in April.
NIH published its draft policy on telling participants what a study found on August 27, and comments close October 26 — three of its questions are addressed to participants rather than researchers, a paragraph counts, and you may answer anonymously. PCORI’s advisory panels open in November, and their meetings are hybrid or virtual-only, which matters if travel is what has kept you from saying yes. Merit reviewer applications are open every day of the year, though that panel meets in person. And the fourth is the one this issue’s other article is about: ask your own state for the month, in April, because a letter in September is a letter about next September.
Tools & Resources — The Word Changes at the Border
chronicpainla.com/the-word-changes-at-the-border
Tools & Resources — Say It First
chronicpainla.com/say-it-first
Research Update — Who Gets a Month?
chronicpainla.com/who-gets-a-month
Open Calls — Ask in the Spring
chronicpainla.com/ask-in-the-spring
Meet a Fellow PWLE — Getting to Know Virginia McIntyre
chronicpainla.com/getting-to-know-virginia-mcintyre
Meet a Fellow PWLE (Featured) — “Somebody Needs to Do Something”
chronicpainla.com/somebody-needs-to-do-something
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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 and the National Institutes of Health; the editor’s paid and unpaid roles with both are disclosed in the standing disclaimer on every article, and in full at the top of “Say It First.”