Whew, this pain advocacy stuff ain't gettin' any easier

Some thoughts, and checking in with you all, it's been a ride so far this year

Hey folks. I’ve been meaning to write, but I still haven’t got my bearings with this new administration and the onslaught of executive orders and mass firings and anti-science, inhumanity of it all. It’s been a chaotic and disorienting and distressing time these last 10 weeks.

While all this is going on, I’ve been writing a paper (with a stellar group of co-authors) on social justice and chronic pain advocacy. You all know I’ve been fighting for some time for people with lived experience of pain to be included in research, treatment development, healthcare service design, policymaking, and education. It’s been an uphill battle, and now the hill ahead has become a mountain, so much steeper, so much higher, so much more precarious and challenging.

It’s a good thing I love mountains.

Me loving mountains.

Speaking of mountains, atop the inhumanity and cruelty of the current administration, so much of what matters to me is being dismantled. This administration is coming for mountains, nature, public lands, the climate, the environment, the planet. It’s coming for science, history, human rights, women, LGBTQIA2S+ folks, Black folks, Indigenous folks, disabled folks, elders, immigrants, public servants, critical thinking, books, literature, art. I could list more, but you get the drift.

And atop all that, I am still trying to navigate health insurance and breast cancer treatment, fighting claim denials, going through onerous appeals processes, and having to call multiple healthcare providers to let them know I’m going through this process so don’t come after me for not paying the bills just yet. Capitalism at its finest.

It’s all incredibly stressful, and ALL of the burden is on the me, the patient. To provide a peek into the issues we face in the US healthcare system, for each appeal I have to upload documents supporting the appeal, including my health plan, the claim denial, screenshots of whose in-network, etc. I have to download these documents from United Healthcare, just to upload them back to United Healthcare, on the same damn website. I have to prove to them, using their own documents and records from their own damn website, that they denied my claim in error.

And it is just that, their errors. Not mine. Not my healthcare providers. There is no gray area, my plan clearly covers what has been denied. To cover our asses, my healthcare providers made all the calls before my appointments to make sure it was covered and that they were in-network and whether or not pre-approvals were required (another onerous bullshit healthcare policy). If AI is making these decisions, the AI sucks. I’ve heard they’re developing other AI to file automatic appeals. That’s friggin ridiculous! Fix the claims denial problem and you don’t need automatic AI appeals!

This is all atop thousands of dollars of deductibles and out-of-pocket costs, paid to different providers through different portals. Just…arrrrrgh!

It’s all incredibly frustrating and time-consuming and distressing, and not at all health promoting or caring, you know what I mean?

Finding joy with my happiest, sweetest girl, enjoying some sun and some snow earlier this month

So it’s been a helluva start to the year. And now there are so many more fights to be a part of that it is overwhelming. I have been in the pain advocacy space for over a decade, fighting against injustice and for health equity for people living with pain. Injustice and equity are now flagged words in this current administration. So are female, woman, and women. But not male, man or men, of course. But male-dominated is flagged! We dare not speak of that. White is totally ok, too, but not Native American, Black, Latinx, or Hispanic.

You see what’s happening here?

I can’t stop thinking about a sticker I saw recently that reads: ‘They didn’t burn witches, They burned women’. About how we talk about the Salem Witch trials and the burning of witches and we don’t call it the Salem Women trials and burning of women, because that’s what it was.

They burned WOMEN.

And now woman, women, female are flagged because the current admin does not want equality or rights for women. This is nothing new. For centuries, actually for close to 4000 years, men in power have deemed us hysterical when we don’t conform to their wishes. To ‘what’s best for us’. When we’re not put in our place.

This hysteria shit started in 1900 BCE, y’all. The purported causes of hysteria have been everything from wandering uteruses to demonic possession (see: witches) to a mental health disorder in the 1970s that was only taken out of the DSM (Diagnostic and Statistical Manual of Mental Disorders) in 1980. That spans 3800 years, and it hasn’t gone away. The new hysteria is somatic and functional disorders. We’re still crazy. Still witches. Still possessed. Especially if we don’t conform, or our pain doesn’t fit into neat biomedical boxes, or we speak up for ourselves.

This is not just ancient history. The NIH here in the US didn’t require that females, women, and minoritized people be studied in proportionate numbers until the 1990s (which only happened when the first woman led the NIH). And we STILL aren’t there yet. There is still so much we don’t know about women’s health, just because we don’t friggin study it. We don’t even friggin study female rodents enough yet! FFS!

And now, in the US, if you want to study women’s health your grant is gonna get flagged. Double, triple, quadruple whammies if you want to study Black, Indigenous, or Latina women, or transwomen, or gay women, or nonbinary folks. Or disabled women. Disabled is flagged y’all. Disabled! And elderly! What kind of ableist, ageist bullshit is this? Atop the racist, misogynist, homophobic bullshit. It’s erasure, it’s inhumane, it’s cruel.

It’s exhausting, right?

Deep breaths. Let’s look at a duck.

Finding joy in my first Mallard duck spotting of 2025, an intrepid fella, it was still February!

Peanut allergy is also flagged, for the record. It’s all so ridiculous, and dangerous. Especially as this admin all proclaims to be free speech advocates (advocate is also flagged, fyi, as is advocacy - I’m screwed for so many reasons), but of course they only mean their speech, and they want to impose their speech and beliefs and world view upon everybody. It is undemocratic, unAmerican, unethical, indecent, anti-health, dehumanzing…it’s just wrong. There is no liberty, no justice for all.

So yea. It’s all a lot.

Where am I going with all this? I dunno, to be honest. I just needed to get some of it out of my head and onto the page, though. Writing is how I make sense of things, and there’s a lot to try to make sense of these days. There’s a lot to figure out. There’s so much to fight against, so much to fight FOR, that I’m not sure what directions my future writing/thinking/doing will take me.

I do know it’s all linked, though. Human rights, the climate, the environment, justice, equity, community, healthcare, science, history. As I said at the jump, it’s only been 10 weeks - 10 WEEKS! - under this new regime, yet it feels interminable. And no doubt there’s more onslaughts on our rights and freedoms to come.

Yet, amidst the chaos, I’m doing some stuff I’m excited about. As I mentioned, I’m currently writing a paper on chronic pain advocacy and social justice, with an amazing author team, that I see as being a jumping off point for a whole lot more writing because there is just SO MUCH. I started it with a simple question that I asked of the whole team, why do we advocate for folks with pain? For health equity? For social justice?

As you may imagine, the answers are both simple and not so simple. Tapping into why we advocate is easy, and universally the result of experiencing some shit. Tapping into the roots behind why we experience some shit is much more involved, much broader, much deeper. There are so many reasons, historical and current, and the more I learn, the more I interrogate the roots, the more reasons become evident. It’s overwhelming at times, but I hope to be able to break it down into manageable bits in future posts.

I’m also giving a keynote presentation in September that I’m really looking forward to. I’ll share more later, I just don’t want to get them in hot water with the trolls. (Sucks SO MUCH to even have to think about such things, alas, here we are.) In it I am going to focus on nature and joy, because I think we need heaps of both right now.

Finding some joy on a powder day in late February

I’ll probably lean into joy in posts here as well. If we don’t prioritize joy, we won’t have enough in the tank to fight, to resist, to build something better. Resist, rest, repeat. Fight fascism, find joy, repeat. Build together, be in community together, cry together, laugh together, repeat. That’s what we can do.

I’m grateful to all of you who are here in community. I have hope for our future and will not give into despair, because I have hope in humanity, in all of you, and I know we will find our way.

Speaking of finding our way, I’d love to hear from you all. How are you doing? Have things shifted and changed for you at all? How are you finding joy? What do you hope for the future? Or whatever else you might want to share!

Much love all. Take care of yourselves. Take care of each other.