Try to Reduce Stress, Okay?

On chronic pain, the NIH, and being a "bad patient" and an advocate

This past week, I had an amazing and daunting opportunity to sit on a panel via Zoom and talk to doctors and researchers at the National Institutes of Health Pain Consortium during their 19th meeting, the theme of which was “Sex and Gender Differences in the Neurobiology of Pain, Its Experience, and Management.” I’d been given this opportunity by the National Pain Advocacy Center, where I met one of the other panelists, Charise Hill.

In thinking about what to say, I wanted to write about a million different elements of the pain experience, but we’d been coached that a personal story was most powerful when it coalesced on a point. So I had to ask myself: what’s my point?

I began to think about all the times that a doctor had told me to try to reduce stress, because stress leads to inflammation and worsens pain. This comment would rattle around in my head for the next week after each appointment, and I kept coming up with replies after the fact. If I’d figured out how to reduce stress, don’t you think I would have done it already?

(Here’s a photo of a beautiful range of mountains in the Adirondacks to reduce stress before we continue.)

And also: I had already been doing it, trying to reduce stress by talking to friends, getting social support, seeing a therapist, taking walks, meditating, and on and on. What was left was the iceberg I couldn’t do anything about: the fact that I had to work and my boss thought stress and anxiety was the main way to motivate people. The fact that I didn’t have enough money to pay for the things my family and I needed. The fact that my insurance was often crappy and offloaded so much of the cost of my healthcare back onto me. At many points in my past, the best way to reduce stress seemed to be to work for and hope for the revolution so that work and the economy would change. Never mind the stress of looming ecological collapse and cruelty and genocide and so many things I could not control.

This is why “Try to reduce stress” fits in with those other individualist dodges, like telling people to reduce their carbon footprint when the petroleum companies have their huge foot on the gas. It implies that we’re all separate individuals, each alone and responsible and powerful enough to change everything about our lives.

This was the text of the talk (edited and reduced somewhat) that I read during my ten minutes of air time at the NIH:

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I developed Hashimoto’s Thyroiditis and then rheumatoid arthritis within a few months of each other, six months after a terribly difficult divorce. The nine-year relationship had been abusive on multiple levels.

While in the relationship, I had a son, the joy of my life. We were financially in serious trouble, and he and I were on the public health program in Ohio, and on WIC and other social programs, all of which saved my life. In many ways, however, I broke the mold. By the time my son was born, I’d done two things that helped tremendously: I got a ton of therapy and I eventually earned two graduate degrees.

As the marriage was disintegrating and as I became a domestic violence case with a local women’s shelter, I was also working as an Assistant Professor in Georgia and had published my first book. In that same year, I asked for a divorce and we had to begin supervised exchanges of my son. My husband and I were both impacted by the legacies of our extended families.

In the fall of the next year I started experiencing pain and exhaustion, and the Hashimoto’s was easy to identify because there’s a clear blood test. My inflammation numbers went way up, so it definitely was safe to diagnose me with RA, which a physician’s assistant did. But in trying to seek a specialist in rural Georgia to begin the biologics that might have quickly put me into a remission, I encountered a haze of prejudice.

“You’re too young and pretty to have RA.” “Your insurance won’t cover an MRI and we need that to see if there’s joint erosion.” “You’re on a lot of pain pills.” “You need to reduce stress.”

Screenshot of the NIH panel with me on zoom with Charise Hill, who I met through work with the National Pain Advocacy Center.

This familiar litany ran out my clock during the time that biologics might have saved me from having joint pain for the rest of my life.

My inflammation levels went down, but the pain I was in was completely crushing, and I also learned that I now had a diagnosis of PTSD. I was prescribed Tramadol, a mild opioid, never knowing that for the next eight years, I would be treated as though I was drug-seeking, which was particularly painful as I’d survived and was impacted by another person’s addiction. In response, I swore off any further opioid use, as it was too traumatic and increased my stress too much.

I believe my body broke down due to stress, triggering a genetic predisposition. In seeking treatment, I encountered so much more stress, which continued and worsened the cascade of pain, stress, and inflammation.

Not one doctor was willing to look at my complete story: ten years of extreme stress added onto the stress I’d come into the relationship with, Hashimoto’s, a surge of inflammation, and falling to pretty low levels of inflammation. Not one doctor asked about causes of long-term grinding stress or about stress in family systems and in multigenerational patterns. Not one doctor was really interested when I told them that my mother has experienced the exact same thing that had had, minus the Hashimoto’s, being both hypothyroid and beginning with an attack of massive full-body swelling and pain.

Why am I telling you this? You, as doctors and researchers, are very familiar with the barriers to diagnosis, and you might be saying that you can’t do anything about that.

I want you to think bigger about taking patient histories and to never again think about stress as being located in a patient’s mind. I come from a family where women have worked and cared for children and borne incredible economic stress, where men’s bodies have been disfigured by that stress. Our bodies—working class women and trans and non-binary people--even those who conform to visual images of successful and middle class--have ragged histories. Our bodies are exploding from the stress.

I recently read an article about what prolonged stress and cortisol does to the body: “The collective, cumulative impact of such repeated stress-related activation on the body has been referred to as ‘allostatic load’ and conceptualized as the accumulated wear and tear on multiple organ systems and tissues that result from the body’s ongoing physiological adjustments to environmental demands. Over time, high allostatic load is thought to accelerate the aging process by dysregulating cardiovascular reactivity and recovery, blood pressure regulation, HPA axis functioning, parasympathetic nervous system activation, and serotonergic functioning.”

Today, I remain sero-negative, just like my mother, and I finally, twelve years after diagnosis, have a rheumatologist in Connecticut who tells me that the sero-negative isn’t because I’m making things up. It’s because the tests aren’t good enough. It’s not an accident that he’s a black gay man. He sees me.

I have one more thing to add, which is a happy ending. I’m now a tenured professor in Connecticut, and I’ve ended up with a great partner. And now, of course, because I like a challenge, I get covid in March 2020 and it quickly develops into long covid. How could it not? I was on methotrexate injections up until exactly the day I got sick.

I then became part of what I think is a model for collaboration between participant-researchers and the medical community. I was part of a vast patient-led research network that created long covid: we summoned it from our experience in real time. When I was told my racing heart was PTSD, I laughed and cried, because I already had it and knew that my heart was pounding for a very different reason. We researched deeply, traded information in Slack groups, coming up with our own treatment protocols, united by the emergency and the state of the internet and the sudden onset.

It took a year for me to regain functionality from Long Covid, but I worked through all of it. I’m non-binary, and I’m now watching patients try to put together why trans and non-binary people have collected a higher incidence of long covid than the general population, and why our connective tissue seems weaker because we are socially vulnerable. It all makes sense in a way that we just need medicine to help put names to. When I was diagnosed with an ascending aortal aneurysm because of the force my body was using to pump blood to get oxygen to my body, I was not surprised. And sadly, I felt confirmed: my body is working so hard. My inflammation vectors are not the ones that track for RA, but they are sky high for post covid, and I ask you to please look into all those different interleukins, not just interleukin 6, to see how many of us are hiding there, and to study the spiking incidence in the overlaps among these conditions.

We are so tired. We ask you to see us. We ask you to think about social history in terms of the world we are holding on our shoulders, through multiple generations of trauma, and to see this social history not as a risk factor but as a fundamental engine of the diagnoses that are shredding our bodies. I ask you to never tell another patient to reduce stress, because that stress is socially created and put on us. It is multi-generational, and is not our fault or under our control, especially for Black women and all of those multiply marginalized. I ask you to see stress as a fact of our lives, a part of our histories, and as embedded not in our minds but in our very bodies.

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I had shared on social media that I was SO nervous to log on and talk to doctors and pain researchers, and I realized that it was partly because I was putting myself firmly in the “bad patient” category. (I always think of Julia Louis-Dreyfus as Elaine Benes on Seinfeld lunging to get the manila folder with her medical records.)

But I did it, and the questions people asked were so so good. And even the planning of the event had been wonderful, with a few patient advocates and conference organizers, especially Charise, stressing that we were experts, that we would not just be reduced to case histories. The act of walking through this gave me a new outlook on what was possible. I am still looking out for whether the panel will be available online later—I’ll definitely share it if I get the link.

Thanks to everyone who helped me calm down in the days and minutes leading up to that thing, and to everyone who has read and supported Pain Woman. That amazing support—it’s always a group project—has allowed me to step further and further into talking back.

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