Category Archives: advocate

Just Talkin’ Tuesday: The High Toll of Postpartum Mood & Anxiety Disorders

Original photo "DSC07197" by poodlerat @flickr.com

#PPDChat tonight got me thinking about the toll of Postpartum Mood & Anxiety Disorders.

A mom with a PMAD is Ground Zero. Her immediate family is in the blast zone, at highest risk for developing their own mood disorders, depression, or other accompanying issues. Extended family is just outsize the blast zone and quite often bowled down as they absorb the shock which reverberates as she flails for survival.

As Mom recovers, Dad may sink into his own dark pit, unaware of what is happening, unwilling to admit his own demons in the dark. Why? Because Dad is the rock, the hinge on which the moon is hung. His family needs him. Depression is a sign of weakness. It does not happen to real men.

Oh, but it does.

Just as Mom has cleared her last hurdle, Dad sinks even further away. He is angry. Frustrated. Hopeless. Lost.

Mom questions her own recovery as Dad lashes out. He is incapable of giving her space in which to grow. Incapable of recognizing her growth, her recovery.

Anger quickly eclipses any rejoicing.

Stress and angst fill the air of the home, adversely affecting their children, their lives, their relationships with friends, families, resulting in isolation.

Their marriage spirals downward. Their children act out.

Their lives fall apart.

Granted, the above does not happen to every PMAD family. But a PMAD affects so much more than just Mom. It truly affects the whole family. My PMAD’s damn near destroyed my own marriage. My husband self-medicated after our second daughter. That did not fall out until after the birth of our third child. What a spectacular fall out it was though. I nearly walked away. Instead, just as with my PMAD, I chose to turn and fight. Fortunately, so did my husband. We were supported by members of our church, our Pastor, and family members as we fought savagely to save our marriage. I wanted to give up several times. So did my husband. We have shared this with each other and in doing so, moved to a new level of communication and trust. It has been a long, bumpy road.

One worth traveling.

While I would not want to do it again, I would not change a thing about my past six years of hell. For they have hewn me into a strong woman, a strong Christian, a strong wife, and a strong Mother. I can finally say I am blessed. God saw me through my storm. I know there are more storms brewing out there. I’m okay with that. Bring it. I am ready to tell those storms just how big my God is these days.

However; if there was one thing I would like to toss out the window it would be the exposure to anger, arguing, and stress for the kids.

I did not choose to have a PMAD. But they certainly don’t deserve to suffer from the ripples set in motion from my experience. I think this is one of the biggest things I struggle with as a remnant of my PMADs. The anger, guilt, rage over their exposure at such young ages to such a harsh environment. Sure, it could have been worse. But they certainly didn’t do anything to deserve it. Neither did I, but they truly are the innocents in all of this. And for that, I am remorseful. Resentful even that my PMAD’s stole their infancy and my enjoyment of their infancies from me. If I could toss one thing in a toll booth bucket and be forever done with it, it would be my remorse and resent over what my PMAD’s did to my kids. I wonder every time they misbehave if it is because I was depressed. Do my daughters have ADHD because I was depressed? What about my son? Are my daughters resentful that he and I have a stronger bond because I didn’t have a PMAD with him? Will they be able to rightfully accuse me of having a favorite? How will I explain myself down the road?

It’s enough to make you blink back tears and choke back anger all at the same time. Nauseating, really.

SO. As I take a deep breath and choke back some of that anger and blink back tears, what remnant or part of your PMAD do you wish you could just toss away and be done with forever? Get it off your chest.

Let’s get to Just Talkin’ this Tuesday.

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Just have faith

While searching for an e-card this morning, I came across one with the three words in this post’s title.

Just have faith.

I paused.

Then I thought about someone saying these three words to a woman in the darkest days of her Postpartum Mood & Anxiety hell.

And then?

I got angry.

Sure, faith is awesomely powerful. It’ll hold you up when you’re struggling, keep you grounded when things are going well. I have no doubt that my own faith carried me through those deep dark days. But if someone had told me to “Just have faith” in the middle of it all, quite frankly, it would have been one of the worst things I could have heard.

But when a person has cancer, diabetes, or a heart attack do we tell them to just have faith? Or to pray harder and everything will be better? Do we tell them to do just that without also encouraging them to see their doctor, take their meds, and go through whatever therapy is set forth whether it be chemo, insulin, diet changes, or lifestyle changes?

Would you do that?

Tell someone with a tumor to “Just have faith” and ignore all that modern medicine has to offer as a chance at survival and remission?

I’m willing to bet you wouldn’t dare.

If you wouldn’t say it to them, don’t you DARE say it to a mother struggling with Postpartum.

Anything else you’d add as something NOT to say to Moms with Postpartum?

The Great Divide: Researchers, Clinicians, Medical Professionals, Peer Support Advocates, Struggling Patients

All across the globe, there are Researchers dedicating their lives to exploring all aspects of Postpartum Mood Disorders. Many of these researchers work in clinics, some are purely academic, and others review the research of others and present a compilation to conclude results.

Clinicians (for our purposes here) are trained in a variety of professions from therapists to psychiatrists to psychologists. These are the professionals on the front line. Some may be trained specifically in Postpartum Mood & Anxiety Disorders while others may be largely unware of the nuances of these conditions.

Medical Professionals often see Postpartum Women prior to a Clinician is involved. These are General Pracitioners, Family Practice doctors, Pediatricians, Obstetricians, Midwives in some areas, ER doctors, nurses, etc. These professionals again, may or may not have additional specific training in Postpartum Mood & Anxiety Disorders yet it is highly unlikely they are familiar at all with the nuances involved.

Peer Support Advocates are in the trenches. These may be made up of survivors, passionate and informed Clinicians, nurses, pediatricians, IBCLC’s, doulas, and a number of other people various walks of life. They become Peer Support Advocates for various reasons but largely due to personal experience from either a lived experience or the experience of a loved one.

Struggling Patients are in the thick of a Postpartum Mood & Anxiety Disorder, often navigating the system for the very first time. Many of them have never had a mental illness before giving birth or pregnancy. They are not familiar with their rights, the issue of medication, diagnosis, follow-through, or where to turn for help. They are filled with guilt, shame, and fear. These families and patients are often afraid to speak up and reach out for help. But their voices are increasing. Yet they are still echoing into an empty cavern as they scream out for the help they so desperately need.

Peer Support Advocates often are the first to hear the cry of the struggling patients. We work with them to find knowledgeable support in their locale. While the possibility of connecting these patients with knowledgeable or compassionate care is increasing, often times, we find ourselves up against a brick wall riddled with barriers to treatment. The biggest barrier is lack of knowledgeable local referrals. Primary referral in many areas is often to an uninformed or untrained Medical Professional.

An uninformed Medical Professional may do more harm than good with a Postpartum patient. He or she may erroneously take the DSM guidelines to heart, refusing to acknowledge a Postpartum Mood Disorder if the patient had her baby more than four weeks prior to presenting with symptoms. Nevermind that the APA itself admonishes the usage of the DSM in such a manner. If the non-mental health trained Medical Professional is informed, then the patient may find herself ushered higher up the ladder into the office of a professional Clinician trained to deal with psychiatric illness and disorders.

Clinicians are not always trained in Postpartum Mood & Anxiety Disorders. Therefore, it’s important for the patient to know what questions to ask when making an appointment with a specialist in the psychiatric field when seeking help for a PMAD. Questions like “Have you been trained in Perinatal Mood Disorders?” or “By whom have you been trained?” or “How long has it been since you were trained?” or “What is your approach to treating PMADs?” are all excellent questions someone who has been trained in Perinatal Mood Disorders would be comfortable in answering. A good clinician will answer honestly that he/she has not been trained but is willing to learn. He/She should offer her viewpoint on treatment and not force you into accepting their way or the highway. A good (and informed) clinician will also keep up with the latest research regarding PMADs.

Researchers are often not in the field with patients. On rare occasion they are clinicians themselves. Many are academic researchers. These researchers study everything from epidmeology to treatment to type of Perintal Mood Disorder, to risk factors, to contributing factors, birth trauma, etc. The issue with Researchers comes in when their research is manipulated, funded by Pharmaceutical companies, involves retro-data, a small data group, or a limited field in which some factors are not viable simply because the size of the group or source of the group is inherently flawed or for some other various reason. This is not to say that all research should be thrown out the window. It shouldn’t be at all. BUT it is important to be able to distill the research with a keen eye and apply some common sense to the outcome.

This is where Clinicians, Medical Professionals, and Peer Suppport Advocates come into play. Anyone trained or in contact with experts in the field of Perinatal Mood Disorders will be able to help you recover. Even those not well-trained but well-meaning and open-minded will be able to help you. If your Clinician, Medical Professional and Peer Support Advocate is willing to help formulate (or find) help which fits your personal lifestyle and belief system, your chances of recovery increase. But if you have a Clinician, Medical Professional or Peer Support Advocate who is closed off to certain avenues of treatment due to a certain aspect of your own life such as breastfeeding, other children, pregnancy, etc, then you may want to continue looking for help elsewhere.

In light of the new guidelines in the DSM-5 which will keep the Postpartun Depression Identifier at 4 weeks, we need to work to get those involved in care for Postpartum Women struggling with disorders talking with each other instead of at each other or indirectly with each other via research, peer support survivors, and trainers, etc. But how do we do this?

How do we get the researcher to share with the Clinician their goals, interests, and conclusions? How do we then get the Clincian to spark interest in the Medical non-specialist Practioner to learn about Perinatal Mood & Anxiety Disorders? Then how do we plug in the Peer Advocate and the patient? How do we open the discussion between Professional, Peer Advocate, and patient? How do we keep the communication going once it’s started? What will it take? How many more tragedies must we endure before everyone involved is ready to talk and on the same page?

Enough is enough. We need to stop talking at each other, around each other, to each other and instead talk WITH each other. Until we do, innocent women, children, and families will continue to struggle, suffer, and possibly even die. I am not willing to let that happen. Are you?

Speak up. Say something. EVERY Word makes a difference. Every.Word.

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The Four Week Rule

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.

Dr. Shoshana Bennett seeking stories of Recovery for new project

Dr. Shoshana Bennett is seeking stories of recovery for a new project. You are welcome to submit your story directly to Dr. Shoshana Bennett by email her at drshosh@droshosh.com.

Your submission should be no longer than two typed pages. Dr. Bennett wants these submissions to cover how you felt at the beginning, during recovery, and then focus on how you feel now as well as any positives in your life now. Is your life better than ever or not?

Submissions are due by the end of October. A bit of short notice, I know, but that’s totally my fault.

So – if you can get two typed pages together by next Sunday for Dr. Shosh, I know she would appreciate it greatly!