Functional Neurological Disorder

Functional Neurological Disorder

Special Thanks to Dr. Ingrid Hoeitzauer who was played on this episode in her appearance on the Podcast Neuropodcases [https://open.spotify.com/episode/5AlMKxFVfzzWE205yt6q1J?si=CFPjcNdTRSWZ2f9pUgfC6g], I highly recommend you listen to the full thing. She was also one of the authors on the research paper Functional Neurological Disorder is a Feminist Issue [https://pubmed.ncbi.nlm.nih.gov/36977553/] by Caoimhe McLoughlin et. al I thought I was a good feminist. I knew about hysteria—the infamous “women’s disease” from centuries ago. I knew it was rooted in the Greek word hystera, meaning womb. I knew that ancient physicians believed a woman’s uterus could literally wander around her body, causing madness, seizures, fainting spells, paralysis, or anything “hysterical” or “dramatic” I knew about the horrifying treatments—ice baths, institutionalization, hysterectomies, the obsession with sex and doctors treating hysterical patients by providing sexual relief and even invented the vibrator as one of their tools for this. I knew that the diagnosis was used to dismiss, silence, and abuse women who didn’t conform—women with trauma, with opinions, with symptoms no one wanted to understand. And I thought the story ended there. I thought that when hysteria was finally removed from medical textbooks in the 1970s, it was a victory. That getting rid of this sexist label meant we’d moved on—that the disease had been discredited, exposed as the patriarchal invention it was. But I was wrong. Because while the word “hysteria” disappeared, the patients didn’t. The symptoms didn’t. The suffering didn’t. What I didn’t know is that hysteria never went away. It wasn’t a fake disease, it was real. Today, it’s called Functional Neurological Disorder—or FND. And this rebranding from hysteria to FND, hasn’t erased the stigma. If anything, it’s made the condition easier to ignore. The same sexist history that shaped hysteria continues to haunt FND. And now, both women and men with this condition are being dismissed by a medical system that still doesn’t fully understand it—or take it seriously. So what is FND? FND is a neurological condition where the brain struggles to properly send and receive signals from the body. People with FND can experience seizures, paralysis, numbness, tremors, vision or speech issues—even memory loss. But unlike stroke or epilepsy, these symptoms don’t show up on typical brain scans. There is nothing physically wrong with the body. And that’s a confusing but fundamental part of this disease: FND is inconsistent. This inconsistency doesn’t just happen, it’s part of the diagnosis. It is the disease. A person with FND might be unable to walk but they can run. They can’t move their arm until they close their eyes. Of someone can’t walk but they can use thier legs to drive just fine. These inconsistencies don’t follow the laws of physics or the patterns we expect from other diseases. And these inconsistencies are admittably confusing which has historically led doctors, families, and society to doubt people with FND—to accuse them of faking, exaggerating, or just being “hysterical.” One example that really drove this home for me is how FND symptoms can be inconsistent even with the laws of physics. Take vision loss, for instance. Someone with FND might describe seeing through a tunnel—like the edges of their vision have just disappeared, leaving a perfectly circular “tube” of sight. But that’s not how human vision works. Our visual field is shaped like a cone, not a cylinder. So if someone were losing vision due to a problem with the eyes or the optic nerve, it wouldn’t fade into a tunnel—it would blur or darken in a cone-shaped pattern from the periphery inward. The problem lies in how the brain is interpreting visual signals—not in the eye itself. FND is what happens when the software of the brain glitches, not the hardware. There is no physical damage. Brain signals just aren’t working as expected, arent’ triggering the correct response. That’s why someone with FND might be unable to walk—but can suddenly run. Or why a limb might seem paralyzed in one moment, but move effortlessly when the person is distracted. The brain’s normal motor pathways are still there—they’re just not being accessed correctly. Because it doesn’t follow the “rules” of traditional neurology, FND has long been dismissed as a psychological problem. But psychology didn’t know what to do with these patients, they considered this a neurological problem and tried passing these patients back. so FND was left out of both fields and dropped entirely. Today, FND is rarely researched, rarely funded, and in many places, not even recognized. In the US you won’t get disability insurance for FND. Right now, there are only 10 clinical trials underway for FND compared to hundreds for epilepsy or Parkinson’s. And yes, women are disproportionately affected—as they are with so many poorly understood conditions. Around 70% of FND patients are women. Some of that may be biology, or social conditioning since women just go to the doctor more, but this is also because of truama. Major traumatic experiences such as sexual assault is a known major risk factor for FND, an experience that is more prevalent in women. And I know what some people will say about that “If trauma is a risk factor, shouldn’t men who return from the horrifically traumatic experience of war also get FND at a higher rate.” And I’m glad you point that out, because what is Shell Shock, if not these same symptoms. Because of the sexist history of FND, doctors might be reluctant to diagnos men with a woman’s disease — FND. So men aren’t getting treatment or support either — an example of how these patriarchal systems hurt men as well. So FND isn’t just a medical topic, this is a feminist topic. Because the way we’ve historically talked about this disease reflects the way we’ve talked about women’s bodies. As mysterious. Unstable. Emotional. Dangerous. Hysterical. And when those narratives take root in medicine, and systems are built around these beliefs, it causes ripple effects to today. But there is a bright note here — things are starting to change. FND is getting more funding then before, but still not enough, but more, and FND is back in medical textbooks. Some even say, we’re in a bit of a “second wave” of FND awareness. I mean if you want to understand the software of the brain, then this disease where the software doesn’t work is probably the best place to start right? But also, more doctors are learning how to diagnose it, more researchers are studying it, and more patients are finally being believed. And this not just because of new current interest in the brain, it’s because more women are becoming doctors, and female doctors do believe female patients. A win for everyone. FND reminds us just how fragile our cultural definitions of health, womanhood, and legitimacy really are. …. -JoCee This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit femstem.substack.com [https://femstem.substack.com?utm_medium=podcast&utm_campaign=CTA_1]

The Motherhood Pay Gap

On average, women make 82 cents on the dollar a man makes. But this isn’t new news, quite the opposite. The gender pay gap has been hovering at 80 cents on the dollar since the late 1990s. There hasn’t really been progress decades, and there are actually been moments when the pay gap sharply widened, like during the pandemic when women were leaving the workforce. But while on average progress on the gender pay gap, individual groups of women have been able to catch up, specifically new grads. Currently, both men and women who graduate college with a bachelors degree in the same field getting the same job will be offered jobs with the same salary. There isn’t really a pay gap during the beginning of a career. This changes as they progress in their career. To paint this picture — when 2 hypothetical new grads, one male and one female, graduate with the same degree and start the same job, their starting pay will be the same. But by the time both these hypothetical people reach the age of 35, their pay gap will haven risen sharply, with the woman making just 83% of the man. When they reach the age of 55, her pay will be only 79% of his. Recent studies [https://goldin.scholars.harvard.edu/sites/g/files/omnuum5966/files/jedc_goldinkerrolivetti.pdf] show that the pay gap is majority of the pay gap is attributed to motherhood. I know what the critics will say: “It’s not uncommon for a woman to put her career on pause when becoming a mother, and you can’t expect her to be paid if she isn’t in the workforce.” And this is true, some women do step out of the workforce once having kids. But most don’t. In 2022, 70% of mothers ages 25 to 34 had a job or were looking for one. Once women have children, even if they don’t put their career on hold - because after all 72% of mothers with children under 18 are still in the workforce — they will be passed up for promotions, and their pay will stall. A common troupe is that mothers aren’t as focused on their career, a viewpoint that isn’t shared with fathers. Once a man becomes a father, he won’t experience a pay penalty, but rather a pay increase, this is called the Fatherhood Pay Premium. This premium results in the gap that working mothers make only 68.9% of working fathers. Ouch. There is this often quoted statistic — that the largest pay gap is between women with children and women without children [https://www.sciencedirect.com/science/article/pii/S0049089X20300144#]. This is where I thought I would start my research into the motherhood pay gap, but what I found shocked me. While it is true that there is a massive pay gap between women with kids and women without kids, this can be explained almost entirely by education. Fewer women with children pursue education. Of employed women between the ages of 25 and 34, over 61% of the childless women will have a bachelors degree, while only 37% of mothers in the workforce of the same age will have children. Once education is accounted for, this gap shrinks substantially. So it made me wonder, how does education and earnings play into the decision to have children? I had always understood that the higher educated a woman is, the fewer children she will have, and this is true, women without college degrees do have the most children [https://www.pewresearch.org/social-trends/2013/05/10/record-share-of-new-mothers-are-college-educated/]. But this is only true up to a point, and that point is exactly at the bachelors degree. Once a woman is college educated with a bachelors degree, her fertility rate actually goes UP the more educated she is. In the United States [http://stacks.cdc.gov/view/cdc/105234], women with a bachelor’s degree average 1.284 children apiece, while those with a master’s degree average 1.405, and those with a doctorate or professional degree average 1.523. This is a new trend. In the 1960s up until the 1990s, this wasn’t true, the age old idea that the less educated a women was, the fewer kids she would have, remained. So what changed? Besides the obvious ones — contraception and abortions are more accessible, women are more educated representing over 52% of bachelors degrees, teenage pregnancy is at an all time low — essentially eliminated all together (thanks to the afore mentioned access to contraception and abortions), but also childcare costs have sky rocketed, individual style families are the norm, and cultural expectations now require more parental engagement in a Childs life — think Pinterest perfect birthday parties, planning play dates instead of just sending the kids outside, even volunteering at schools which takes up more time then it did just one generation ago. But also we had the war on the Welfare Queen [https://www.ebsco.com/research-starters/law/welfare-queen-stereotype] where society yelled loudly at women “don’t have children you can’t afford”. While much has changed, there is something that hasn’t changed. The desire to have children. 90-92% of women want children, and most women do have children. But something more interesting is occurring — recent studies show that in places with below replacement fertility rates (the United States, Europe, even Nordic Countries, etc), most people want more children than they are currently having. To oversimplify a recent study looking at the history of childrearing desires in Europe [https://austriaca.at/?arp=0x003905ff], most people want two children. The problem is that having children is less and less accessible — that is, unless you have money. Which brings us back to the education conversation. While higher education doesn’t guarantee a higher income, it is a good proxy for income levels, and it might explain why the most highly educated are having the most children — they are the ones who can afford it. Children are a luxury item. Not just because childrearing is incredibly expensive, and there is not much community or government support (but lots of judgement), but also because those who make more money are the ones who have access to having children through IVF and surrogacy. An option not available to people who don’t have 15-30 thousand dollars lying around — a completely inaccessible cost for the majority of American’s who can’t even afford a $1000 emergency expense, let alone a $30,000 IVF cycle. As you’ll hear later, having children is an expensive endeavor — from the obvious and immediate medical expenses of childbirth which is an average of $18,000 in the US, to childcare which now exceeds the price of college tuition in 38 states, but also to the non immediate financial impact that is the financial hit on the mother’s career — either elective or not — an experience so common it has a name the Motherhood Pay Penalty. To dive deeper into the Motherhood Pay Penalty, I am excited to bring on the show my former podcast host, Kara, who herself is a mother of two and runs a new podcast where she interviews women leaving maternity leave, entering the workforce, and experiencing the motherhood pay penalty. This is the topic she studies, and someone who knows the ins and outs of the financial impacts of motherhood — so enjoy our conversation on the motherhood pay penalty. If you enjoyed this podcast episode, please consider subscribing to future episodes: This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit femstem.substack.com [https://femstem.substack.com?utm_medium=podcast&utm_campaign=CTA_1]