Thursday, September 27, 2018

When Medical Symptoms are Dismissed as "All In Your Head"

http://www.berkeleywellness.com/healthy-community/health-care-policy/article/when-medical-symptoms-are-dismissed-all-your-head

Expert Q&A

When Medical Symptoms Are Dismissed as 'All in Your Head'
by David Tuller, DrPH

Journalist Maya Dusenbery's new book—Doing Harm: The Truth About How
Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and
Sick—is an in-depth examination of how gender bias in medicine has
negatively impacted women's health for generations. In a starred
review, Publishers Weekly noted that Doing Harm "skillfully
interweaves history, medical studies, current literature, and hard
data to produce damning evidence that women wait longer for diagnoses, receive inadequate pain management, and are often told they are imagining symptoms that are taken seriously in men."


Dusenbery, a Minnesota native, has written about women's and
reproductive health issues for a wide variety of media outlets,
including Slate, Cosmopolitan.com, HuffPost, TheAtlantic.com, and Teen
Vogue. She is the editorial director of the feminist site
Feministing.com, and she has previously been a fellow at Mother Jones
magazine and a columnist at Pacific Standard. Before becoming a
full-time journalist, she worked at the National Institute for
Reproductive Health. Doing Harm, which was published by HarperOne, is
her first book.

We recently talked with Dusenbery about her book and her other work.

What started you on this book project?

About five years ago I was diagnosed with rheumatoid arthritis, and
that got me started down this path. I had a pretty easy time getting
diagnosed and always felt my concerns were taken seriously. Once I was
diagnosed, I got interested in learning more about autoimmune
diseases. I learned that many autoimmune patients—most of whom are
women—aren't as lucky as me. According to one recent survey, the
average autoimmune patient sees four doctors over four year before
being properly diagnosed, and about half report being dismissed as
"chronic complainers" during that time. And as I started to tune into
it, I started hearing lots of stories from female friends and peers
who'd struggled to get diagnosed with other health problems and felt
like their symptoms weren't being taken seriously, or that they were
being treated as if the symptoms were "all in their head." And as a
feminist I wanted to understand what those experiences were rooted in.

The book reviews how ME/CFS (myalgic encephalopathy/chronic fatigue
syndrome), fibromyalgia, many autoimmune diseases like multiple
sclerosis, and other chronic illnesses are all part of the group you
refer to as "the disorders formerly known as hysteria." Can you
elaborate?

There are a lot of diseases we recognize today that have been carved
out of a wastebasket diagnostic category of illness that in past
centuries was called hysteria and since then has gotten different
euphemisms, like psychogenic, psychosomatic, or somatization
disorders. ME/CFS is one of them—I think that is a pretty dark example
of a condition that disproportionally affects women and is very much
stereotyped as a women's disease. That is in large part why, I would
argue, it is understudied and belittled. Skeptics of the illness have
often pointed to the fact that it mostly impacts women as a reason to
believe that it's psychosomatic.

That's a common pattern. Conditions like interstitial cystitis,
fibromyalgia, endometriosis, and vulvodynia also have a very similar
history: You find descriptions in the past medical literature that
match them, but for decades beginning in the early 20th century, when
hysteria came to be seen as a psychological problem post-Freud, they
were just assumed to be psychosomatic. It wasn't until the eighties
and nineties that some of these conditions were even named and
defined, let alone studied. And for all of them, it's been very
difficult to get research funding because they were assumed to be
psychosomatic. But that's the catch-22: You can't prove they're not
psychosomatic unless you do the research. And again, I think a major
reason that medicine has been so content to believe these conditions
are psychosomatic is that they disproportionately impact women, and
there's this long tradition of viewing women as especially prone to
"hysterical" symptoms.

What were your main findings about why we're in the situation we're in?

The book lays out two problems that I see in the system—what I refer
to as the knowledge gap and the trust gap. The knowledge gap refers to
the deficit of knowledge we have had about women's bodies and about
conditions that disproportionately affect women. That's a legacy of
the many decades during which women were excluded from clinical
research and their concerns were a low priority on research agendas.
And the trust gap has been the tendency on the part of health care
providers to not trust women's self-reports of what they're
experiencing in their bodies—to minimize, normalize, or psychologize
their symptoms. And that, in turn, has led to a lack of trust in the
medical system on the part of women who have experienced this
dismissal.

For me, the most striking thing that I discovered in the research was
how those two problems seem to be so mutually reinforcing. The less
knowledge we have about women's health, the more women find their
symptoms are "medically unexplained," and then the symptoms often get
dismissed as psychological. So the knowledge gap sort of creates this
presumption that women's symptoms are often psychosomatic. On the flip
side, the tendency to assume that women's unexplained symptoms must be
psychosomatic has perpetuated these knowledge gaps, since it leads to
a lack of research—and even a lack of awareness of the need for
research.

I think this is very much a problem that's rooted in systemic and
unconscious gender bias. I certainly don't think in most cases it's
based in any sort of consciously held prejudice—it's about these
implicit assumptions that we all have, male or female, in the medical
profession or not. And it's also in large part about how medical
knowledge itself has been impacted and skewed by gender bias over the
centuries. I'm hopeful we can turn this around, because there does
seem to be somewhat more openness within the medical profession today
to thinking about these implicit biases and acknowledging that there
are some gaps in medical knowledge.

Can you elaborate on the concept of medically unexplained symptoms?

Medically unexplained symptoms, or MUS, is a phrase that applies to
individual symptoms that patients present to a doctor that the doctor
doesn't think are attributable to a physical cause. The term is also
used to refer to a range of illnesses, like fibromyalgia, ME/CFS,
irritable bowel syndrome, and others without identified causes. Most
patients with MUS—about 70 percent, according to the medical
literature—are women. In the literature, MUS is often used
synonymously with terms that imply a psychogenic cause, like
somatization disorder. That reflects a deeply ingrained tendency in
medicine to assume that anything that is "medically unexplained" must,
by default, have a psychological explanation instead.

So the problem is that medicine tends to see medically unexplained
symptoms not just as medically unexplained but medically
unexplainable. And the term is also used as if it is a disease
category in and of itself. That is, MUS is talked about as if it's a
'thing,' even though it covers everything from idiopathic low back
pain to unexplained seizures or other symptoms that are only united by
the fact that they're not fully explained by medical science. These
symptoms go into that diagnostic wastebasket, which is where
everything we can't explain goes until we can explain it. Over the
decades, many conditions have been removed from the wastebasket and
accepted as legitimate diseases as we have come to better understood
their underlying mechanisms. But, as we've seen with ME/CFS and other
"disorders formerly known as hysteria," that evolution can take a long
time because they're less likely to be researched if they're in the
wastebasket.

Another big problem with how the concept of medically unexplained
symptoms is used is that it tends to obscure the reality of diagnostic
errors. In the medical literature, it's reported that a high
percentage—from one-third to two-thirds—of patients seen in both
primary and secondary care have MUS. But there is not much
acknowledgment that at least some of these cases are patients with a
perfectly diagnosable disease who just haven't gotten that diagnosis
yet. There are very few follow-up studies to show how many patients
with alleged MUS actually get diagnosed down the line. Often it's not
even acknowledged that you need that follow-up study—that saying X
percent of symptoms are medically unexplained without knowing what
happened afterwards isn't very meaningful data.

What are the implications for patients if something is treated like MUS?

Symptoms that are lumped into this category are thought to be already
explained by psychiatric problems, so patients are inappropriately
treated with psychotropic drugs or referred for psychotherapy. And, of
course, they're also not getting the treatment they do need. If
patients are labeled with MUS when they actually have a
yet-to-be-diagnosed disease—like an autoimmune disease—that can mean
lasting disability or death.


There is also a lot of circular reasoning when it comes to deciding
that a patient is experiencing MUS. Doctors are told that patients
with MUS tend to insist that their disease is physical, resist
psychiatric treatment, and see many health care providers—or "doctor
shop." But, of course, all of those things are exactly what a patient
with an undiagnosed medical condition would be doing. These are
perfectly rational behaviors and yet they're somehow taken as hallmark
signs that these patients don't have a physical disease. This creates
a very dangerous dynamic where once a patient has been labeled as
having MUS, it becomes extremely difficult to convince doctors
otherwise—everything you might do will just seem to confirm it.

Isn't this situation frustrating for doctors as well as patients?

Very much so! And I'm certainly sympathetic to individual doctors—I
can see how it would be very easy to be frustrated with patients
experiencing an illness you can't explain, and then project some of
that frustration onto the patients. But it's important for doctors to
recognize that a patient who is reporting symptoms that they don't
have any explanation for might have her symptoms explained down the
line by another doctor. And what I learned from experts in diagnostic
error is that there is overconfidence among doctors about their
diagnostic skills—they recognize that diagnostic errors happen but
think that they personally don't make them very often.

And that's not even their fault. The problem is we don't have feedback
systems in place that will actually let doctors know they made an
error. So they assume they've gotten the diagnosis right unless they
hear otherwise—and they usually don't unless the patient themselves
comes back to tell them they were wrong. In other words, they
overestimate their batting average, and they also continue to hold the
same stereotypes they had about her: that she was yet another woman
complaining of "medically unexplained symptoms." And that affects how
they perceive the next woman who comes to them reporting similar
symptoms.

Frankly, doctors should be on the front lines calling for an
investment in scientific research to explain these poorly understood
conditions so that they are no longer in the position they're
currently in: unequipped to offer a large percentage of their patients
an explanation and effective therapies for their illnesses. This
status quo is bad for everyone, doctors and patients, and severely
erodes the doctor-patient relationship. But doctors are in a better
position to bring about the change that's needed to close these
knowledge gaps.

Published September 27, 2018

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