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~Seek first to understand, then be understood~
If you're looking for information on a particular topic, type that word in the search box below. If I have written about that subject, a list of posts will appear. If no posts come up, I haven't written about it...yet. Emails, and questions in the comments section for possible posts, are welcome.
I have a "friend" who shows up once a month. She turns my world upside down, over and over again.
I am a good person, caring and sweet, but when she comes to visit, I could rip off your head.
She takes no prisoners, foul words she does spout, I try to keep the words in, she lets them come out.
People don't understand me, or what this is about, to have this creature inside my head.
I despise who I am, half of the time, I feel sorry for my daughter, family and friends.
There's no way to describe it, for those who don't know, it's a living nightmare, she really needs to go.
~Neysia Manor, Rest in Peace

Sunday, April 17, 2016

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.  

Sunday, April 10, 2016

PMDD Quote of the Week - A Doctor's View

April is PMDD Awareness month.  I can't begin to imagine how much further we would be along the path to health and healing if we only had more doctors like this.  This woman "gets" it.
What is PMDD?
"A reproductive disorder whereby women experience transient physical and emotional changes around the time of their period, PMDD is associated with a level of impairment that is similar to major depressive disorder and poorer quality of life compared with community norms, therefore it should be considered a serious health condition. PMDD can have adverse consequences on a woman's social functioning, relationships, work productivity and healthcare use..."
"Treatment generally continues for duration of a woman's reproductive life.  If one considers that a female typically menstruates 300 - 500 times during her lifetime, timely identification and initiation of appropriate treatment may prevent impairment.  This, together with support and TLC from loved ones or spouses, can go a long way in improving the quality of life of PMDD sufferers."
~Dr. Eileen Thomas, a specialist psychiatrist at Akeso Clinic, Milnerton (Cape Town, South Africa)

To read the full article, go here.

As Dr. Thomas so rightfully points out, a female can experience up to 500 menstrual cycles during her lifetime. I also mention this in my books, PMDD and Relationships, and PMDD:  A Handbook for Partners.  Below are a couple of sample excerpts:

Let’s do the math. The average age of female puberty is 12; the average age of menopause is 51. Round that off to 40 years of menstruation. Multiply that by 12; that gives you 480 months of periods if you never have children, less if you do. Let’s go with 450 periods for now. That gives you 900 weeks of pre-menstrual issues. Divide that by 52 weeks per year, and you get 17+ years that a woman can spend in the living hell that is PMDD.
Seventeen years, people!
Seventeen years is a long time to feel and/or be out of control. Seventeen years is also a long time to be on medication, especially medication that studies now show doesn’t work more than half the time.
Listen, nobody knows for sure what causes PMDD. All scientists know is it is a biological event that manifests as emotional symptoms. What does that mean? It means PMDD is caused by something that happens in your body and shows/expresses itself in your moods. The closest science has come to defining what happens is that whatever happens, happens in concert with your menstrual cycle, and involves your hormones. The hormones they have looked at the most are estrogen, progesterone, and now a metabolite of progesterone, called allopregnanolone.
Some schools of thought are convinced it has something to do with the levels of these hormones in your body, and whether they are in the right balance or not. But you can’t detect PMDD with a blood test, and every estrogen/progesterone blood test I have taken has shown my levels to be perfectly normal, even when I was in the middle of a PMDD episode.
I think the best science has come up with so far is that yes, PMDD does have to do with your hormonal fluctuations, but it’s more that something goes awry in your brain when processing these normal and natural hormonal fluctuations in your body.
That’s right. Something goes wrong in your brain.
No news to us, right? We’ve known all along something wasn’t right with our brains, with our thinking processes, during an episode of PMDD. Why else would we say and do the things we say and do during an episode, but not during the rest of the month?

As part of PMDD Awareness month, I invite you to share in the comments section below any adverse consequences YOU have experienced in your social functioning, relationships, work productivity and/or healthcare use due to your PMDD.  Share to help make aware!

Sunday, April 3, 2016

PMDD Quote of the Week

Getting out of PMDD is as if someone who is strangling you around your neck, suddenly decides to let you live.  Slowly releases their hands and you feel the air kicking into your lungs, and you immediately start appreciating your life, your talents, and your inspiration for life.  And you feel accomplished for making it one more time... Congratulations, strong ladies!  ~Miroslava Byrns