I sat in a very heated session at the Postpartum Support International/Marce Conference this morning.
Ellen Frank, a volunteer working on the Mood Disorders Committee, spoke with a very passionate group of volunteers and researchers about the upcoming recommendations the DSM-5 will hold for Postpartum Mood Identifiers.
After stating there was no clear cut off for risk of onset, Dr. Ellen Frank Ph.D stated the DSM-5 would continue to include FOUR WEEKS as the cut-off date for onset. She later clarified this was due to the additional lack of no clear offset for symptoms in the current body of research.
As I tried to wrap my head around this logic, several women, several of my fellow volunteers, survivors, stood to make their way to the microphones placed throughout the room once Dr. Frank bravely opened the floor for questions. What was then witnessed was an outpouring of the angst and horror these women felt in their hearts in regards to this announcement.
Four weeks. FOUR. WEEKS.
It simply cannot be four weeks. Four weeks is nowhere near long enough for a Perinatal Mood Disorder cut off.
Why?
Let’s explore that by creating a time-line of what happens in a woman’s life after she gives birth.
(All birth stats below sourced from tables found here: Statistical Brief #11)
A woman gives birth vaginally with or without complications but no surgery. She is in the hospital for 2.5 days.
A vaginal birth complicated by a surgical procedure other than D&C and sterilization nets you 3.3 days.
A cesarean section with complications earns you 4.6 days while without complications gets you 3.4 days.
That’s one week.
Now mom goes home right as the Baby Blues peak around day four or five.
She may or may not have a significant other or family member able to stay home with her to help with an adjustment period over the first week home.
That’s two weeks.
Significant other returns to work. Mom is at home. The baby blues should resolve early in the third week as they peaked at the end of the hospital stay for moms who had a cesarean section with complications. But contradicting recommendations often advise new moms to seek help if Baby Blues last longer than two weeks.
That’s three weeks.
Mom is still at home. Lucky if she’s had a shower every day, slept more than 45 minutes at a time, may or may not be dealing with the beginnings of the stress of her new infant on her marriage and home life. The Baby Blues have barely resolved at the beginning of this week if she’s on the longer end of the spectrum. Mom is spinning and has no time to stop and realize that there may be something wrong. In fact, she’s barely unaware that four whole weeks have passed since the birth of her infant as her priority does not involve checking her day planner for the cut-off date for the Four Week Rule.
That’s FOUR weeks.
Normal infants do not settle down to sleep regularly until 8 weeks old according to some research. So mom may not even sleeping decently until 8 weeks postpartum or even longer. And we all know what a little sleep deprivation will do for the symptoms of Perinatal Mood Disorders.
C-section recovery can take anywhere from 6-8 weeks and may increase mom’s risk for Postsurgical Depression.
And last but certainly not least, women in America typically do not go for a Postpartum check up until SIX WEEKS postpartum with the exception of complications developing prior to the expected appointment.
By her six week appointment, Mom has had a chance to have the blues dissipate or explode.
Mom risks her OB dismissing her symptoms as a Perinatal Mood or Anxiety Disorder if the good folks on the DSM-5 committees have their way.
As a woman who was told, by her OB, that because she was more than four weeks postpartum she could not possibly have Postpartum Depression, I am urging the good folks at the DSM-5 to reconsider.
My first OB’s rigid belief in the DSM-IV set off a chain of events which would ultimately land me in a psychiatric hospital.
You see, he believed that at four weeks, all my hormones got up off their asses and did a happy dance until they were all right back where they belonged. Clearly, the questionnaire on which I had marked having the desire to harm myself AND my infant, meant nothing.
NOTH.ING.
Essentially, he sat across the desk from me and agreed I was a little sad but did not feel it rated any additional or insightful training. He did refer me to the in-house therapist. Want to know what they did? They called me and canceled. The third time, I was racing through town with my infant daughter strapped into her car seat as she screamed at the top of her lungs.
This is me.
Screaming at the top of my lungs.
The DSM-5 people are wrong.
WRONG.WRONG.WRONG.
But they won’t know that until you are available and ready to speak up too.
Dr. Frank did let us know today prior to opening the floor that she LOVES to hear from the community at large. (That’s YOU!)
So what can you do to help?
First of all, you can go to the DSM-5 evauluation site. Register as a participant. Sign up for notifications if you can do so.
Secondly, speak up. Make your voice heard.
If you KNOW of research showing the onset of Postpartum Depression beyond four weeks, please, share it with the committee. Dr. Ellen Frank assured us that the work groups READ, SHARE, and DISCUSS every comment received.
(The comments section is currently closed but you can still register. The current revisions are undergoing Field Trials. The data will be reviewed and posted in May 2011. It will be up for approximately one month for public comment. Comments will close on June 30,2011 at midnight.)
The Four Week rule is simply not acceptable and we need to fight tooth and nail to get it changed.
No woman deserves to walk into a doctor’s office and be told “No, there’s nothing wrong with you because the book says you’re way past the time when it should of happened.”
It’s a very dangerous and irresponsible thing to tell a woman who is possibly on her last string of hope that she’s just fine when she KNOWS, she KNOWS deep down she is not.
It’s a liability. It’s just not right.
Speak up. GET heard. Make this right.
Head over to the DSM-5 website to register as a participant. Speak up. Tell them your story if you were diagnosed after four weeks or if you WEREN’T diagnosed after those four weeks because of the The Four Week Rule.
You have an opportunity to really make a change here.
SEIZE IT.
How was there not a riot right there, right then? (that’s all I can type at the moment or it could get ugly.)
I am also at this conference, although I’m listening from the perspective of a student and a researcher. And what I am hearing – loud and clear – is that we need to do a much better job of communicating what these standards mean to doctors and the other people that you are seeing out in the community. Another commenter yesterday morning mentioned that most women are not going to see the doctors in this room – they are seeing people with little knowledge or expertise re: PPD. Nobody in that room would have told you that you could not have PPD. What the DSM-IV (and now 5) would say is that you could be diagnosed with a Major Depressive Episode, but you would not get the additional label of “With Postpartum Onset.” It’s an additional specifier, but it’s not a diagnosis. If you meet criteria for an MDE, you meet criteria, and you deserve treatment and compassion, period. The specifier is meant to signal when an episode begins. Technically, someone with depression that began during pregnancy (or before) also doesn’t “qualify” for the specifier. I am not sure where the idea for the qualifier came from, but as a researcher my guess is that they wanted to promote research on depressions that *begin* during this circumscribed period to see if there is something particular about women who get depressed in this very small time period – for example, vulnerability to hormonal changes (like David Rubinow discussed).
Although depressions beginning outside that tiny window wouldn’t be officially diagnosed as a “Major Depressive Episode, With Postpartum Onset,” there is no reason it couldn’t be called “postpartum depression.” “Postpartum” is an adjective. If you’re a woman, and you’ve recently given birth, you’re postpartum. If you’re depressed, too, your depression is postpartum. This is a really clear case of a disconnect between how scientists define things in the “official book” and how people naturally think and talk about them. In this case, I am hoping that is OK. It is obviously important for women suffering from PPD to be able to identify as having “postpartum depression,” and not just “depression.” There is something special about it. Kathy Wisner mentioned that this hasn’t stopped, and isn’t going to stop, researchers from studying PPD as most of us think about it.
As clear as this is to me, I absolutely believe the women in that room when they say that this specifier caused problems for them. That tells me that, as researchers and clinicians who care about this issue, we have a serious information problem. Doctors need better knowledge of what the diagnostic possibilities are and what they mean and what treatments are out there and how to get them to you. Regardless of what a giant book (that honestly sits on our desks gathering dust and taking up space most of the time) says about postpartum depression, there is no excuse for a woman to be told she does not deserve help and compassion.
Laura, there are a couple of problems with the specifier. If a woman’s PPD doesn’t set in until 9 months, like mine, then the diagnosis of MDE can haunt her for some years to come, or until she gets the full name for what she went through. Haunt her because so many of us “have no reason” to feel depressed when we had that MDE. …so it seems random, and like it could happen anytime. It can feel like it is just lurking in the background, ready to leap out and knock a mother to her knees–whenever–again.
Another thing about it being called MDE versus PPD is that without the postpartum specifier, one misses out on an entire community of support, understanding, and the *proper information* about what is going on.
An MDE is just not the same as “PPD.” I say “PPD” because, although it is more accurate than MDE, “PPD” only begins to touch on the postpartum mood/anxiety disorders. Honestly, of the many, many, many moms I talk with, most (~75%) have anxiety, often (~50%) with the scary thoughts of OCD. There is such a recurrent theme with moms and their …MDE, that honestly, there should be a whole separate category in the DSM V. And specifiers of up to one year for the thing to have started, under the categories of depression, anxiety, OCD, panic and PTSD.
While the specifier may refer to an MDE that STARTED during the first 4 weeks, MANY professionals read it as meaning it can only *happen* in the first 4 weeks.
And there is my short version of why a 4-week specifier is not helpful.
Ugh. As a counselor and individual who has struggled with depression (maybe post-partum?), I understand what the specifier of 4 weeks means for diagnosis. I also agree that it needs to be extended. At four weeks postpartum, I barely knew whether it was day or night. I also believe that, for me at least, breast-feeding (such as it was in my case) helped mediate against PPMD. I did deal with some depression after stopping bf’ing…and I personally think that fits into the category of PPMD as well, regardless of the age of weaning. I also dealt with depression following pregnancy loss… and discovered that PPMD can occur then as well. The months following that left no doubt in my mind the depression was a hormonal issue (possibly PMDD, which leads to other DSM-V issues!) I’ve also been appalled over the years at the lack of understanding OBs have shown regarding depression and symptoms of that. I also agree that being diagnosed with a MDE can lead to issues later in life — and it IS different than PPD. Also… the reality is that anxiety and depression often co-occur, even outside of PPMD. I have no idea why the postpartum specifier is only on depression.
FYI, the DSM-V website says it is now closed to visitor comments.
Thanks for the update. I think she said it would open back up in May. I’ll have to go back and look at my tweets from the session.
With my son, it hit immediately from day one. With my daughter (2nd child) it didn’t start until she was TEN MONTHS. I am appalled at the 4 week limit. FOUR WEEKS? I know someone else who didn’t have symptoms until 11 months. But with treatment she became herself again. Wow. That is such a step backwards…
Sadly, it’s not even a step backward. It’s a lateral step. The identifier was at 4wks last time they “updated” the DSM. Very hard to swallow the failure of the research community to gather reliable data which would allow this time line to be changed. VERY Hard.
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