PMDD - When Women Who Don't Have it Do Harm to Those Who Do

April is PMDD Awareness Month.  Last week, I presented a Quote of the Week from a psychiatrist in South Africa who does indeed understand what PMDD is about and the need to treat it.  This week we present the flip side of the coin--the side most of us are unfortunately all too familiar with--in the form of a guest post by fellow blogger Twilah, written in response to a TED Talk in which a woman psychologist proceeds to negate the validity of PMDD by, among other things, dismissing PMDD and its sister disorder PMS as a cultural myth.

Twilah: This TED talk came to my attention because it was posted on a PMDD forum online. Other women complained that the talk seemed invalidating and dismissive of the illness they live with. I tend to agree with the feedback of the women affected by PMDD. This is my analysis.

The speaker, Robyn Stein DeLuca, opens by gauging the audience’s familiarity with the concept of PMS. She establishes that PMS is a familiar concept with easily recognizable symptoms. She goes on to point out that mainstream American media accepts and propagates ideas and assumptions about PMS.

DeLuca then drops her bombshell that after five decades of research the jury is still out on PMS. It’s poorly defined, treatment protocols vary… it may not even be real! She explains how historically the symptoms of the disorder described by psychologists varied so greatly that the very definition of PMS became meaningless! 

She goes on to outline the shabby research techniques and protocols that characterized the presumably five decades of research she referred to earlier. She claims that the DSM “…in 1994…redefined PMS as PMDD, Premenstrual Dysphoric Disorder.”

Actually the DSM didn’t distinctly include PMDD until DSM 5, which was released in 2013. Prior to that, the DSM 4 included PMDD not as a distinct mental illness, but as a “depressive disorder not otherwise specified.” The speaker heralds the clarity established by the diagnostic guidelines offered in DSM 5. She then points out that under the new criteria in DSM 5 the number of women affected by PMDD turns out to be only 3-8%, which she considers “not even a lot of women.”

So DeLuca opens with a claim that five decades of research hasn’t supported the premise that PMS exists. Then she points out how poorly conducted much of that research was. 

Okay…you are using five decades of research that by your own reports doesn’t count for anything to support your premise that PMS is a dangerous and erroneous cultural creation? It’s generally a bad idea to use volumes of poorly conducted research as support for anything. And a mere 3-8% of presumably the world’s female population is affected? If women are slightly less than 50% of the estimated 7 billion humans on this planet, and about 2 billion of these women are menstruating, then 3% of menstruating women translates to roughly 60 million women with PMS/PMDD…whichever she is calling it right now…because she wants to undermine a PMDD diagnosis by conflating it with a cultural concept of PMS!  (Liana speaks up:  I want to say here that PMS and PMDD should never, ever be used interchangeably, as they are two separate conditions, and while PMDD affects 3-8% of menstruating women, PMS is said to affect approximately 80% of menstruating women. That means this woman, aside and apart from the huge disservice she is doing to women who do have PMDD, is also dismissing the monthly experiences of possibly another 1.6 billion women and calling it "good news".) 

Head spins…

She goes on to posit that, “the PMS myth” persists because of cultural limitations on the role of women.

Now I won’t argue for a minute that many cultures, especially the American one to which she is primarily referring, frequently limit the roles of women. Popular conceptions of PMS have been used by sexist people to minimize women’s speech and self-advocacy. That is undeniable. But the irrational interpretations of a sexist culture have zero bearing on whether a medical condition is real. Many well established medical conditions are stigmatized and used to oppress individuals affected by the conditions. Think of any disease that might cause a person to wear a colostomy bag, think leprosy, think any one of legions of mental illnesses. Simply because a culture uses a diagnosis to oppress a person with the diagnosis does not mean there is no validity to the diagnosis. The cultural interpretation of the illness needs to be addressed, the disease doesn’t need to be denied. 

DeLuca’s assertion that PMS is a largely Western concept is irrelevant also (Liana: as well as totally untrue). Lots of women’s health issues are more marginalized in non-Western societies. That has no bearing on their realness or validity. If society at large and physicians in particular choose not to discuss the high infant mortality rate in any country that doesn’t hold women in high regard, that doesn’t mean high infant mortality doesn’t exist in that country. That means it isn’t talked about or researched in that country.

To say that diagnosis and treatment of PMS or PMDD is anti-feminist is more hurtful to 60 million women than much run of the mill sexism. To have other women, who we would hope are our allies, take a stand to deny us diagnosis and treatment for a life threatening condition is morally reprehensible. 

Because that’s what PMDD is. It is a life threatening condition. The 3-8% of women who are affected by this disease experience job loss, relationship difficulties, relationship loss, depression, and potentially suicide. And this woman thinks it is helpful to stand up in a forum like a TED talk and tell people that it’s really no big deal that over 60 million human beings deal with this disease every month? To suggest it is a cultural problem and not a medical problem? She criticizes what she calls “the medicalization of women’s reproductive health.” I criticize the politicization of a medical disorder. I criticize speech that discourages further well conducted research into a life threatening illness.  (Liana:  Up to 30% of women with PMDD regularly experience suicidal ideation or attempt suicide.  15%  those succeed.) 

The root of the problem is not a cultural misperception about PMS. The root of the problem is that an endocrinological disorder is being treated as a mental illness. The problem is that the hormonal health of women is being handed to psychologists and psychiatrists for treatment. Imagine going to a psychiatrist for your diabetes or your hypothyroidism. What do you think the outcome would be? What do you think the data would show? Imagine a man being told to go to therapy instead of being given testosterone supplementation for age related testosterone production changes.  (Liana:  I half agree, but also disagree.  If psychiatrists and psychologists are the only medical professionals attempting to take PMDD on, then I would gladly go to them over accepting no medical help at all.  But I do believe PMDD is more an endocrinological disorder than a mental one.)

DeLuca says that, “…the success of medication in treating PMS symptoms vary from woman to woman.” She uses that as evidence to support the invalidity of a PMS diagnosis. Of course the success rate of using psychiatric drugs to treat a hormonal disorder would have varying rates of success! Considering the efficacy of antidepressants to treat depression is disputed, with estimates ranging all over the place, it’s not surprise the efficacy is unpredictable when you prescribe a psychiatric drug for an endocrine condition. I’m sure you’d find the same kind of inconsistency if you prescribed Prozac for erectile dysfunction. A man just might get an erection because increased serotonin made him happier overall. (Liana:  If the medication doesn't work, that does not mean the condition is not real.  It means the medical options provided are not addressing the medical issue.)

But wait, we’re talking about women.

This presentation is so off base. The problem isn’t that a make believe, culturally based illness is being given credence. The problem is that a hormonally based illness is being investigated by mental health professionals, simply because one aspect of its presentation is similar to recognized mental illnesses. The problem that American society uses the term PMS to dismiss or demean women’s emotional states is a completely separate issue from research and treatment of a disease that may affect more than 60 million women. The problem is that an educated women would stand up in front of an audience of thousands and undermine the health concerns of millions of fellow women.

Let’s not back away from helping women because existing research is incomplete or inconclusive. Let’s fund more and better studies. Let’s take seriously the complaints of millions of women that their health is being affected by their hormones. Let’s listen to women’s voices instead of dismissing them. 

Twilah's blog can be found here.