 Greetings! We’re excited to send this special news blast to let you know about an important piece that came out in the New York Times featuring NPAC’s Dawn Gibson, to tell you a bit more about Dawn, and to kickoff Pain Awareness Month today with more information about our #RealPainStories campaign!
We hope you enjoy this bulletin and look for our late summer newsletter coming soon.
My warmest regards,
Kate
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New York Times: Pain patients are the unintended victims of the clampdown on opioid prescribing
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The New York Times has released a long-awaited video article, “They Live in Constant Pain, but Their Doctors Won’t Help Them.” This comes after leaders at NPAC contributed time, expertise, lived experiences, and pain policy analysis in the development process for this important publication.
The piece features chronic pain patients, including NPAC’s Secretary, Dawn Gibson, who lives with spinal arthritis. Gibson talks about her quality of life before and after her doctors discontinued opioid therapy as part of her multimodal treatment plan:
Before
“I was able to run on a treadmill, exercise, go shopping, do volunteer projects with my church.”
Now
“It’s literally like radioactive termites are chewing your goddamn bones.”
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“It’s good to see high-profile coverage of a critical issue we’ve been raising for years,” said Kate Nicholson, Executive Director of NPAC, “and the piece is powerful. There are things I wish they'd handled differently, but I’m grateful to the New York Times for shining light on a rarely acknowledged public health tragedy that impacts millions of Americans – people we hear from every single day.”
Learn more about Dawn in this interview with NPAC’s Director
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NPAC Spotlight: Dawn Gibson, NPAC founding board member, talks #SpoonieChat, advocacy, and the experiences of women of color in pain
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NPAC’s Director, Kate Nicholson, sat down with Dawn Gibson to talk about her mission-driven work.
Kate: Recently, you were featured in the NY Times video on chronic pain and access to medication and also in a piece for INvisible on disparities and pain. Briefly, what’s your hot take on each of these issues? Why is raising awareness so important to social change about pain?
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Pain care sounds like something that will just take care of itself — like there’s somebody or something that will just make sure that the right people get what they need — but it’s not like that. Pain patients only have what our system and culture decide they should have.
I think the New York Times did a great job showing the intense impact of the pain care crackdown on our quality of life.
The INvisible piece showed the disruptive power of pain in our lives. There is no aspect of my life that pain doesn’t hurt.
Read Dawn’s INvisible piece, here.
Kate: Congratulations on being elected Secretary of NPAC! You also lead NPAC’s Community Leadership Council and are a founding board member. Why NPAC? Why advocacy?
Thanks!
I joined NPAC because we’re a group of good hearted serious folks committed to transforming the negative pain care culture harming patients and providers. The independence from industry is also a plus.
Advocacy is the best way I know to change hearts and minds. We need to tell our own stories to the people shaping the way we are perceived in the world and receive health care. We need to hold them accountable for the choices they’re making about our lives.
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Call to Action: NPAC is Leading a #RealPainStories Campaign to Elevate the Impact of Chronic Pain in our Communities
NPAC is collecting #RealPainStories to share across digital media channels during Pain Awareness Month in September and beyond. Chronic pain disrupts lives, and we need your help to bring to light for others what this looks like for you. Every story matters.
Participating in #RealPainStories is your chance to shine a light on the real-life harm to people and families caused by pain.
Your story may already be featured on NPAC’s website (check this link), or perhaps you’ve been interviewed in the past by another group?
We’d love to have you join members of NPAC’s Community Leadership Council in sharing #RealPainStories. Just use the hashtag #RealPainStories and tag @national_pain when sharing on your preferred social media site!
But FIRST – please ask yourself some questions…
Guidance Before Sharing a Story:
It is absolutely essential that you feel comfortable with the information that will be shared in #RealPainStories. After all, these are being shared in a public forum.
For example, ask yourself if it's okay for an employer or family member to read or hear what you’re sharing. If not, consider editing or going with a different story.
Also, please do not share private medical information such as details of your prescriptions in your story. This is important to protect you.
Whether it’s just a few sentences or something bigger, we look forward to hearing your stories – in the way you want to tell them, with what you feel comfortable sharing!
Prompts and Ideas to Get You Started:
Here are some prompting questions and important guidance to help you get started on your own #RealPainStories from our resident professional writer with pain, Community Leadership Council member, Sonya Huber.
- Do you have an object or picture that represents your life before you were in pain? What's different now? Or do you have an object (cane, etc.) that represents your life in pain or shows how you cope with pain?
- What has been a difficult or challenging moment this week/month/year because of pain?
- Write a list of things you do or have to consider during an average day to deal with your pain.
- Describe your "professional/advocate/public" self, and then describe what people don't see about your pain.
- If you have experienced a particular challenge or life-changing moment that connects with your pain, can you describe it in three "scenes" (before, during, and after)? Each "scene" can be as short as a sentence; providing detail to let people see or imagine the moments is helpful. I.e. if you remember the onset, you could describe what that was like as one of these.
- What are you now an expert in after dealing with your pain? For example, maybe it’s mastering gluten-free baking, or mindfulness.
You could consider telling your story through a photo with one line, or a thread. You might can consider telling your story through a storyboard. This process includes thinking about the main idea you want to share and gathering details, such as pictures, words, text, music, or video. This can help you lay out the entire story from start to finish.
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ICYMI: NPAC’s Late Spring Newsletter – See What We’ve Been Up To (psst, it’s a lot!)
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If you missed our Spring/Early Summer bulletin, it’s worth a read, as there are many great things happening, including:
- NPAC members appointed to the Interagency Pain Research Coordinating Committee (IPRCC)
- DEA Proposes Rules on Prescribing Controlled Medications via Telemedicine
- Colorado Adopts Law Protecting Prescription Drugs for Chronic Pain
- California and the Federation of State Medical Boards Consider Updates to Controlled Substance Prescribing Guidelines
We’d love to hear what you think about our revitalized newsletter. Please consider sharing your feedback.
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