NPAC Spotlight: Dawn Gibson
NPAC founding board member, talks #SpoonieChat, advocacy, and the experiences of women of color in pain
Dawn Gibson, NPAC Secretary
NPAC’s Director, Kate Nicholson, sat down with Dawn Gibson to talk about her mission-driven work.
Kate: Dawn, can you tell us a bit about yourself and how you build community around pain, such as your founding of #SpoonieChat and your work foregrounding the experiences of women of color?
I’m a former youth and young adult Lay Chaplain turned health advocate and writer. I founded the Spoonie Chat community on Twitter in 2013 to connect rheumatology patients with resources and support and provide solidarity after noticing patients repeating the same questions about their disease processes, treatments, and side effects like nausea and vomiting.
The spondyloarthritis space often lacks diversity, especially where Black Women are concerned. I founded Spoonie Chat as a generalist space, and was later invited into the spondyloarthritis space after my following grew.
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.
Our board, advisors, and community council are thoughtful, creative, and actively engaged in the pain space in more ways than can be counted. It feels amazing to work with them.
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.
“Pain patients only have what our system and culture decide they should have.”
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?
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 NYT piece 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: You’re a fervent advocate for the importance of self-care for people with pain. Why is this important? What brings you joy?
Self-care is probably the most important relationship that we have with ourselves. It’s where we show and tell ourselves that we value ourselves. We also model this as peers and elders in our families and communities. Admitting our limitations and working a sound self-care plan is good for us and everybody around us.
It’s tempting to give up on taking care of our divergent, frustrating bodies, but we don’t deserve neglect or self-abandonment. We deserve to be cherished and taken care of.
I love to knit, crochet, and raise and watch butterflies. Handknits are the right mix of challenging and fun. And there’s something satisfying about picking out the perfect yarn and making a one-of-a-kind item exactly the way I want it.
Hand raising butterflies is modern alchemy. For the price of parsley for Black Swallowtails or milkweed for Monarchs, recycled jars, and time, I get to have butterflies. Each one has their own individual markings, like fingerprints. So you’ll never see the same one twice.
The caterpillars are super cute. Sometimes they fall asleep right in the middle of eating. Then they wake up and go right back to eating.
Sometimes I wake up to a bunch of butterflies waiting to be released. It feels like magic every time. I love to watch them fly away. It feels great knowing that there’s one more butterfly out in the world.
Sometimes they come out by surprise. In 2019 I found a butterfly flying around in my office. It came from a caterpillar I accused our dog of eating in 2018. It got loose in 2018, made a chrysalis on a table leg, and came out just fine. Penny the dog was innocent!
I’m also a big baseball fan, so naming the butterfly Mr. Jack 42 Robinson made sense. Robinson was known for his beautifully ambitious style of play and for stealing home, one of the hardest things to pull off.
Read Dawn’s interview with Rebecca Vallas of The Century Foundation for her Off/Kilter podcast on the importance of self-care to social movements, here.
Kate: I know calls to action are near and dear to your heart. Anything you want to encourage our stakeholders to take action around now?
I’m so glad you asked! Right now we are working on a #RealStories campaign to be shared during September for Pain Awareness Month and beyond. We need lots of stories that can help others understand what they might not easily realize – to make the invisible visible to others. For example, we want to share examples of how pain really hurts people’s lives, and the disruption caused by high-impact pain.