2 posts tagged “treatment history”

Is there a medical gender gap? The not-so-brief history of sexism in medicine

Posted March 27th, 2018 by

As Women’s History Month comes to a close, take a look at the gender gap in health care and how the centuries-old notion of “hysteria” may still taint women’s experiences today.

History of “hysteria”

Turns out, there’s nearly 4,000 years worth of evidence that people believed women’s illnesses stemmed from the uterus or sexual issues.

  • An Egyptian papyrus dating from about 1900 B.C.E. includes recipes for medicines to coax a ‘wandering uterus’ back to its proper place in the body.
  • The ancient Greek philosopher Plato described the uterus as an animal, which roamed inside women’s bodies, causing symptoms as it moved.
  • In the Middle Ages, many believed in humoural medicine, which linked so-called “hysterical symptoms” to the retention of “sexual fluid” in women.
  • During the late 1800s, belief and scientific interest in hysteria reached a fever pitch. French neurologist Jean-Martin Charcot proposed that hysteria was a nerve disease similar to multiple sclerosis and not unique to women. Sigmund Freud argued that hysteria was rooted in “unconscious conflicts” or embarrassment, which converted into bodily symptoms. He called this “conversion hysteria.”

In the early 1900s, hysteria got lumped under the broad category of “neurosis” and the term gradually fell out of medical use but the concept still lingered in broader culture, according to the British Science Museum.

Present day sexism

Writer Maya Dusenbery, who has rheumatoid arthritis, makes the case that sexism still haunts modern medicine in a new book called Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

Here are some key stats and dates she cites:

  • Three-quarters of the estimated 50 million Americans with autoimmune diseases are women; patients with autoimmune diseases see an average of four doctors over four years before they receive the correct diagnosis, and nearly half report being labeled “chronic complainers” during their search (see our recent report on the diagnosis “lag time” for PatientsLikeMe members with various conditions)
  • Researchers understand far less about women’s biology because of a scientific gender gap. Up until 1993, the National Institutes of Health wasn’t required to track how many women were included in the research it funded with federal taxpayer dollars. Women (particularly those of childbearing age) were often excluded from clinical trials because of “a paternalistic concern about the risks to them and their future offspring” and because “researchers found it easier to study only men” — and even research on animals used (cheaper) male mice.
  • In addition to the research gap, there’s also still a “trust gap” in medicine, Dusenbery says. “While the term ‘hysteria’ has fallen by the wayside, the concept has remained alive and well,” she says, noting that other terms that have taken its place include: Briquet’s syndrome, somatization, conversion disorder, psychosomatic, psychogenic, and functional symptoms. About 70 percent of those with “medically unexplained symptoms” (today’s popular phrase that often implies “somatized emotional distress”) are women.

Some patients are raising their voices about these gaps. Documentary filmmaker Jennifer Brea, who has chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME), addresses the trust gap in her recent film Unrest and her TED Talk, “What happens when you have a disease doctors can’t diagnose.” And some conditions that are far more common among female patients, such as lupus, are finally getting more attention from researchers.

But Dusenbery wonders how many countless women have fallen through the cracks of these gaps in the system. “The harm done by medicine’s gender bias is difficult to quantify but staggering to consider.”

Have you experienced gender bias in your medical treatment? Join PatientsLikeMe today to connect with 392,150 women living with health conditions.

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The Patient Voice: Interview with Mountabora (Mood Conditions Community)

Posted June 4th, 2009 by

Yesterday, we announced a new report called The Patient Voice for Inpatient Therapy, which highlights patients’ top tips for having a positive inpatient therapy experience.  Maureen Oakes, community manager for PatientsLikeMe Mood Conditions Community (for people with depression and other mood conditions), recently interviewed 3-star member, Mountabora, about her experiences with hospitalization.   Here’s what she had to say:

picture-41 (Maureen) You note in your member profile that you have been hospitalized a few times. What were those experiences like?
picture-11 (Mountabora) Being in a psychiatric hospital is kind of like being at summer camp. You’re away from home, living in close quarters with strange people, and participating in structured group activities which may or may not have a purpose. There are a lot of rules, and you lose privileges if you don’t follow them. You have to get up way too early in the morning and eat three meals a day at the cafeteria.

There’s a lot of emphasis on learning coping skills, typically through classes and worksheets. There’s also a lot of emphasis on medication; most patients are on at least two or three psychoactive drugs. You go to therapy and you see a psychiatrist, but much more often than you would if you weren’t hospitalized. It’s basically a condensed version of what you’d get as an outpatient, in a controlled environment.

I’ve been treated at six different hospitals in four states over the last ten years, and I’ve had both wonderful and horrible experiences. The state hospital I went to was more like a prison than a hospital. Patients were restrained and drugged against their will, the nursing staff obviously didn’t care, and I had to wait days to see a psychiatrist and then threaten to take them to court before they’d discharge me. The private psychiatric hospitals were much better, with specially trained art, exercise, and family therapists, productive classes and groups, and lots of one-on-one time with nurses, therapists, and psychiatrists. Unfortunately, this seems to be a situation where you really do get what you pay for.

picture-41 (Maureen) If you could tell other patients one thing about having a positive inpatient therapy (or hospitalization) experience, what would it be?
picture-11 (Mountabora) Hospitalization is very expensive, so treat it like you would any major purchase. Discuss options with your psychiatrist and have a clear idea of why you’re going in and what you’re expecting to get out of it. Once you’re there, take full advantage of the services the hospital offers. Learn as much as you can from both staff and fellow patients, participate fully in groups and individual therapy, and make the most of the (hopefully) peaceful and structured atmosphere.

I also would recommend that anyone with a serious mental illness take some time to learn about patients’ rights in their state or country. You never know when you’ll be put into a situation where you have to advocate for yourself.

picture-41 (Maureen) In a our new report, The Patient Voice on Inpatient Therapy, we summarize top themes cited by our community members regarding their positive inpatient therapy experiences. Do you have anything to add regarding these themes?
picture-11 (Mountabora) I really wish hospitals would put more emphasis on coordination of care right from the start. Almost every time I’ve been hospitalized, I’ve been thrown in with an unfamiliar psychiatrist who gives me a new diagnosis and a completely different set of medications. It took a lot of painful trial and error for my psychiatrist to come up with this diagnosis and treatment plan, and I’d really rather not have to go through it all over again every time I go in to the hospital.
picture-41 (Maureen) You’ve been a very active member of the PatientsLikeMe community for a while now. What do you find helpful about using the site?
picture-11 (Mountabora) I like being able to keep a centralized record of my mood and treatment history that I can use as a reference or share with treatment providers. Theoretically, this information gets transferred from provider to provider, but in reality, I know that a lot of things have fallen through the cracks over the years and my quality of care depends on me being able to give an accurate account of what’s happened so far. I wish I had started this when I was first diagnosed. Maybe I wouldn’t have been hospitalized so much.
picture-41 (Maureen) Thank you for sharing your story and experiences with our PatientsLikeMe community, and with the mood conditions community at-large!