[image quote]: "The issue is clinical sensitivity...We need to find a way to keep that from being a dismissive thing...and it's still used to this day—to this minute—to dismiss people's health experiences and illness experiences." - Cyrena, episode 17; Newly minted PhD, Lupus + Bipolar Disorder Patient

[image quote]: "The issue is clinical sensitivity...We need to find a way to keep that from being a dismissive thing...and it's still used to this day—to this minute—to dismiss people's health experiences and illness experiences." - Cyrena, episode 17; Newly minted PhD, Lupus + Bipolar Disorder Patient

17 It's 'Just' Stress (episode page)
Description: In this week’s main episode, we talk about the link between stress and biology, epigenetics, the limitations of scientific knowledge and science communication, and the indelicate habit so many doctors have of telling patients their mysterious symptoms are “all in their head.” A patient with both Bipolar Disorder and Lupus, Cyrena recently passed the dissertation defense for her PhD with research in inflammatory markers in adults who experienced early life stress. You can hear part one of Cara's conversation with Cyrena, about her experience pursuing higher education in the biomedical sciences, in episode 13 - “Why Stop at One?”

[intro]
Hey there and welcome to In Sickness + In Health! This is a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is almost never not annoying.

This week’s episode is part two of my conversation with Cyrena, my guest from episode 13. We talk about the link between stress and biology, epigenetics, the limitations of scientific knowledge and science communication, and the indelicate habit so many doctors have of telling patients their mysterious symptoms are “all in their head.”

After a successful dissertation defense, Cyrena has officially achieved PhD status, which of course deserves a thousand congratulations. If you haven’t already, you can go back and listen to part one of our conversation, in which she talks about the long road it took her to get here, and today’s bonus episode in which she tells the story of the rare spinal cord stroke she experienced two years ago, and the perils of not taking your own serious symptoms seriously. A PhD is a pretty impressive achievement in and of itself, but with the health challenges she faced along the way, this PhD was earned with the figurative—and sometimes literal—equivalent of walking to school uphill both ways in the snow. So, congratulations Cyrena, you truly deserve it.

That dissertation she defended last week was on her research into inflammatory markers in adults who experienced early life stress. Stress, and how it relates to our physical health, is something that gets a lot of talk, but our scientific understanding of the link between the two is still in its infancy. Very often, especially for women, very real health problems are blamed on stress or anxiety. We are told this by our doctors, by the people in our lives, and even by ourselves. While it does seem there is some relation between psychological stress and physical symptoms, the explanation that those symptoms are a mere manifestation of psychology is an inaccurate over simplification.

What little we do know doesn't really support that idea. What little we do know is that things are nowhere near that simple. Not only is it very often an incorrect assertion, it effectively places blame on the patient for not doing a better job of “managing” their stress, or coping with past trauma. The implication is that we are simply not trying hard enough. We are told to reduce stress, it’ll make us feel better, but as I and so many of my listeners can tell you, eliminating stress is not only impractical and often impossible, it’s also pretty ineffective.

It’s also pretty irresponsible for doctors to conclude a patient’s symptoms are psychological in origin, and eschew all future responsibility for treating and diagnosing them. The presence of a psychiatric disorder, even if one does exist, does not necessarily rule out a physical cause for symptoms, and sometimes psych symptoms are actually symptoms of an underlying biological process. I recently read Susanna Cahalan’s memoir, Brain on Fire: My Month of Madness, which is about the onset and diagnosis of a rare autoimmune disease that attacked her brain. It first presented with largely psychiatric symptoms, including mania and psychosis. Her family insisted she stay on the epilepsy ward at NYU until they were able to diagnose her rare disorder, in spite of being repeatedly pressured by doctors to admit her to a psychiatric ward. If she hadn’t gotten the proper treatment, it is likely she would have died, or spent the rest of her life institutionalized. Until her diagnosis, which comes in the last chapters, throughout the book was a chillingly familiar refrain from doctors who had reached the limit of their knowledge: this was a psychiatric illness brought on by stress.

Denying a patient the reality of their physical experience can be very detrimental. Especially for patients with difficult to diagnose conditions, that have already been dismissed and passed off more times than they can count. If they weren’t already dealing with trauma, trying to find answers and being denied and gaslighted repeatedly can be traumatizing enough. There’s another fatal flaw in medical doctors blaming symptoms on psychological issues: as Cyrena pointed out in part one of our conversation from episode 13, access to psychiatric care is inconsistent and inaccessible for large portions of the population. Insurance coverage for such services is even spottier. Psychiatric care and therapy can be helpful for many patients as part of a team approach, but dumping patients into the world of mental health care, without concurrently supporting them medically can be even more damaging.

This isn’t to say that our mental state has NO impact on our physical health. As Cyrena and I both talk about in this episode, we see a clear correlation in our own bodies between the two, but it so clearly is not the cause of the symptoms we experience. And that’s where so many practitioners go wrong: they blame stress or trauma for symptoms they don’t understand and can’t diagnose.

Sure, early life stress, and stress in our current lives seems to contribute to many chronic conditions, but in spite of a growing body of research in this area, we don’t really know exactly how or why. There’s plenty of people who will point to a single study or two and say, “see? this is how it works,” but that’s simply not how science works. It’s going to take us a while to figure this out, if we ever figure it out at all. As I mentioned in episode 11 with Dr. Jill, we are often knowing more and more about less and less.

The truth is, we have no idea what’s going on. It’s incredibly difficult to figure out how we get sick. Epidemiologists have been trying to figure it out for hundreds of years, but it’s really complicated. As we touch on in the interview, our health seems to be some complicated combination of genetic factors, and our environment, and what goes on in our lives. Because we can’t study these factors in isolation, it’s quite difficult to point to any one factor as the source of a given illness.

This is the same reason proving a causal link between poor health outcomes and environmental exposures to specific chemicals has been so difficult. I can recommend the book Toms River: A Story of Science and Salvation by Dan Fagin if you’re interested in getting a more thorough understanding of this and where it fits into epidemiology. It is about toxic dumping in my home state of New Jersey, cancer clusters, and the challenge of proving a definitive link for the sake of compensation and criminal prosecution. I didn’t grow up in Toms River, but my hometown was also affected by toxic dumping, and you can see a documentary about it on HBOGo called Mann v. Ford. If you’re paying attention to leaded water crisis happening in Flint, Michigan right now, this is something that the people of Flint will be dealing with for decades to come. Toxic exposures like these exist at the intersection of health and disability and class and race and the criminal justice system, and are something that I hope to cover much more of on the show in the future.

Speaking of science, and how we learn the things we *do* know, Cyrena does talk a bit about animal testing in this episode, which I know can be upsetting for many people. We don’t go into any graphic detail, but I’ll let Cyrena explain a bit about that now:

[Cyrena clip about animal testing]

As always, I’ve included links in the show notes to learn more about some of the stuff we talk about in this episode, including the chapter Cyrena mentions she published on the "Immune Consequences of Early Life Stress." I’ll also link to an episode of On Being with Rachel Yehuda, one of the researchers who has spent a large portion of her career studying post traumatic stress in Holocaust survivors, and she talks about trauma and resilience across generations. We touch on this research briefly in my conversation with Cyrena.

If you’d like to congratulate Cyrena on her PhD or have questions about her research, you can find her on Twitter @cginpvd. You can find more from In Sickness + In Health at insicknesspod.com and on social media @insicknesspod. You can email me at insicknesspod@gmail.com, and if you have a moment, please rate and review us on iTunes, it will help other people find the show.

[interview]

[outro]
Thank you for listening to In Sickness + In Health, check out this week's bonus episode where Cyrena talks about the rare spinal stroke she experienced a couple years ago, and why it’s important to take your own serious symptoms seriously. You can find Cyrena on Twitter @cginpvd, and more from in sickness +in health at insicknesspod.com and on social media @insicknesspod. If you can take a few moments to rate and review us on iTunes, it will help out the show.

And don’t forget to be excellent to yourselves and each other.