Intrusive Thoughts: A Conversation

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emergency-stop-buttonYesterday, I wrote “Let’s Talk About Intrusive Thoughts.” Today? I’ve intertwined stories from moms (including myself) who have all experienced intrusive thoughts in one form or another during their postpartum experience. For one mom, she didn’t experience them until her son was two and she was off medication, something that made the experience even more difficult.

Again, as with yesterday’s post, if you are in a fragile state, please skip reading, particularly if you find that you are easily influenced by reading the experiences of others. We don’t hold anything back.

I also want to remind our readers that every mother’s experience and subsequent reaction/seeking of help is different; molded to her own life and journey. These mothers did the best they could with what they had available to them at the time – the important thing, though, is that each one of them fought like hell the best way they could to get free of these horrible thoughts holding them captive.

Today’s video is a fun one. Tiny Hamsters Tiny Date. Hamsters. On a DATE. AWWWWW.

 

 

 

 

coffee-791201_640Picture it, 2015, a small coffee shop on Main Street. A group of women sitting, sipping various hot beverages, chatting among themselves. No one thinks anything of it, until they get close enough to hear their conversation.

“I wanted to smother my daughters on the day my brain nearly broke. The thought played over and over in my head. Before THE day, I had obsessive thoughts about knives. I couldn’t use them. I cleaned obsessively. Scrubbed my hands. I exclusively pumped for my second daughter, which only fed my cleaning obsession. The stress. The meds. They broke me. I just couldn’t do it anymore. Before the thought grew feet, I curled up in the fetal position in bed, afraid that if I got up, I wouldn’t be able to control my actions. I still remember the way the wind rustled through the giant oak outside the window and the squirrels scurrying along the massive limbs. I had never been so scared in my entire life.” Even though she shared her experience this often, her voice still broke as the memories washed over her.

“I wanted to drive my car into oncoming traffic while my kids were in the car. And don’t get me started about the panic attacks I would have while driving,” one of them said.

The rest nodded slowly, their faces somber yet understanding.

“I wanted to drive off overpasses or bridges. I would think, what if I just let go of the steering wheel? I also thought about not waking up in the morning. Something I later found out was what they call passive suicidal idealizations. I didn’t really want to hurt or kill myself, I just didn’t want to wake up. Oh, and while pregnant with my second? I wanted to throw myself down the stairs.”

As the women nodded, one of them clenched her cup a little tighter, then started to speak, softly.

“I…I…..I bounced back and forth between harm and sexual. Mostly knives and pillows were the focus of the harm ones. But really anything I saw turned into a weapon in my mind that could hurt my son. Then, an incident happened at our church where a mother and her husband were assaulting her daughter. My mind latched right on to it as if it were the edge of a cliff and if I let go, I’d fall. I thought she was “normal”…and I thought I was “normal.” If she could do it, then what was to stop me from doing it? This thought swallowed me whole, it was always there, clinging to me: did I wipe too much…was I looking at “it” …. did I want to do something? Mostly with my child but during the worst of it, even when we were in public…which I started to avoid because I was convinced something in my mind flipped and I WAS my thoughts. It was around his first birthday when the other ones popped up. The news or shows I watched determined my obsessive thoughts for the day. During the worst of it, I would say if I had one every 30 seconds..it was a GREAT day as they were always one after another. …no breaks.”

The others in the group again nodded in solidarity. There wasn’t much they hadn’t heard by this point.

“I didn’t realize I had a problem when my son was an infant. I just couldn’t stop picturing the real dangerous chemicals that do actually “off gas.” At some point, I crossed from knowing that this was an environmental hazard to picturing or imagining the chemicals on our skin, in our hair, in the air we were breathing. They eventually had colors. Each type had a different color. The worst was plastic being heated…” her voice trailed off. This realization has been tough for her.

“I had visions of stabbing my precious new baby over and over.  I couldn’t stop them.  I couldn’t conjure up a happy thought.  I couldn’t distract myself.  I couldn’t relax.  I sure as hell couldn’t zone out watching the Food Channel with knives being brandished left and right.  It was like being stuck in rough surf close to the beach where you just can’t seem to make headway on land before the next wave crashes over you.  I was in a black hole of terror that started a few days after my beloved son was born.  My soul draining each moment as the horror show played over and over in my head.  What kind of a mother would ever think such a thing?”

Finally, the last woman in the group spoke, “My story doesn’t start when my son was an infant. Two years later, and off medication, my anxiety came back, fiercely. I was a very angry person. Was off for three months. Never felt quite like myself. Then we went on vacation. I don’t know if it was the stress of the trip or my brain just not being well, but my anxiety came back just as it was when the baby was born. But worse…I thought I had moved past it all. I was very angry. Couldn’t look at my child. I even had a fleeting intrusive thought of pushing him in front of a moving car while we went for an evening walk. And whenever my son wanted to wrestle around, as boys do, I had urges to actually cause him harm. Thoughts would pop up of pushing him down or being really rough with him.”

Customers in the coffee shop came and went, catching fragments of the conversation as they did so, each of them slightly perplexed at the depth and magnitude of the topic contrasted with the seemingly nonchalant way these women were discussing these dark thoughts in public. But not one of them stopped to comment or join in. There were a few raised eyebrows and strange looks as the snippets delved into their space, but nothing beyond that.

The women continued, sipping coffee and tea as the sun peered through the window of the quiet coffee shop, discussing how they each managed to move past these thoughts intruding on their lives.

“I ended up in the ER, then in a psychiatric ward. My med was changed. I began practicing self-care. I threw myself into advocacy and growing my own support group. I needed to know that my crazy wasn’t going to be permanent, that others had survived. Eventually, I ended up on meds and in therapy. I’m still on meds, for OCD & anxiety, and I am okay with that. I remember hating the pills. But now? They’re part of me and just the way things are. I’m a much stronger woman and mother because of what I have been through. And my self-care skills rock.”

“I would shake my head to banish these thoughts of driving into oncoming traffic from my mind. Eventually, I realized I am not my thoughts. They didn’t hold any power over me. I listened to music, books on tape, called friends and family, used deep breathing techniques from yoga. I pictured these horrible thoughts as bubbles just floating away. The thoughts still crop up from time to time when I am sleep deprived or very stressed. Medication and therapy were key to helping me develop the tools I needed. I needed to change that negative loop in my head and realize that my thoughts were just thoughts.“ She sipped her coffee, legs crossed as she glanced around the cozy shop.

“Medication helped immensely. Therapy helped me find strategies to cope with and shut down the thoughts. When my anxiety is high these days, I still struggle with Intrusive rage-filled thoughts. But I am better armed to recognize them and cope,” she said, firmly.

“I constantly asked my husband if he thought I would xyz. I was told that I had to stop confessing so the thoughts would become less important to me. That was SO hard, because I thought if I just “sat” with them in my mind, it meant I was ok with the thoughts. But eventually, I saw that it did work. It was a hard battle to be ok with them NOT bothering me because I was always told crazy people don’t know they’re crazy…the thoughts don’t bother them. When they started to bother me less, I worried!!! I still have them, but now I can brush them off. If I let myself slip and start confessing, it’s like a drug. It stops the anxiety for just a little bit. It feels so good you want to continue! I have to also watch what I read or see on tv because I find myself comparing: if they did that, maybe I would too. I even remember comparing myself to all those mass shooters. I searched for news stories of Andrea Yates, seeking any tiny trait similar between those folks and me. Now, I always try to bring up intrusive thoughts with my moms. Intrusive thoughts are SO not talked about and really should be.”

“My thoughts would get softer, like music, if I could avoid them. I tried to shop my way out of it, too. Organic cloth diapers with wool covers hand made by other moms. Glass and stainless steel. Only one brand of organic formula. Organic foods for me and the baby. New shower curtain, fabric and then a phthalate-free liner. I cleaned with vinegar or baking soda. Washing clothes. I did so much laundry. I knew all the ingredients in my laundry detergent. I could handle even pajamas with flame retardant chemicals if I just washed them enough….which doesn’t actually do much, but it was not as logical a compulsion as it seemed to be. I also sought out other moms who worried about the same things, or did the same things, so that I could talk about cleaning with essential oils or lanolizing wool without sounding “crazy.” I’m just now starting to talk about what all of this really was. It explains so much about my many behaviours.”

“I slowly got better with therapy and medication. The intrusive thoughts ebbed and finally faded.  Only there was still this huge gaping hole in my heart. I swear you could see all the way to infinity and back that hole was so big. I was sure I would never really be happy again or be joyful as mother because this terrible experience haunted me. I put on brave face. I cared for and played with my baby. I worked hard at my job. I prayed, tried to meditate, did yoga, spent time with dear family and friends, and watched chick flicks. I did all my happy things. Only it was still there—that void of fear and sadness over this experience. One day I found a blog full of other mothers’ stories of surviving postpartum mood disorders.  The founder put it out there in a matter-of-fact way about how postpartum depression, anxiety, OCD and psychosis are simply treatable diseases. And she got other women to share their stories on her blog.  Reading these stories let me know I wasn’t alone. It was huge. Apparently, a lot of us moms obsess over just one terrible image. Our brains all go haywire in a similar way!”

Every mother there nodded in agreement, knowing exactly how it felt to be the owner of a brain gone horribly haywire.

“I would have to stop playtime, breathe and regroup my thoughts. Knowing I didn’t WANT to cause him harm, and wouldn’t, but was scared of what might happen if I continued. I’ve come to terms with so much the past six months. The Climb and all my warrior moms have really helped a lot this year. I am a proudly medicated mommy! Things are much better these days. Much better.”

The moms chatted for awhile longer, about more acceptable things, such as childhood milestones, what kind of wines they preferred, and what their weekend plans were for the upcoming holiday. As the conversation navigated in this direction, the reaction of the customers in the coffee shop as they passed by them changed. They smiled, offered suggestions about local events for the upcoming holiday, and one older woman even complimented one of the mothers on her jewelry.

As the mothers stood to leave, each of them grabbing their purses, making sure they had their phones and their keys, they hugged, a little tighter than they would normally, because they had bonded in a way mothers who haven’t been in this type of hell can’t.

They went their separate ways, then, their hearts and minds forever entwined as fierce survivors and warriors.

 

PS. If today’s post has you feeling fragile, please find me on Twitter @unxpctdblessing or email me at mypostpartumvoice(@) gmail.com. I will be happy to talk with you about whatever it is you’re feeling.

 

{photo source, pixabay}

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Let’s Talk About Intrusive Thoughts

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emergency-stop-buttonThis post deals with Intrusive Thoughts. If you are struggling, fragile, or easily influenced by reading the intrusive thoughts and obsessions of others, please avoid reading this post. For those who choose to stop reading now, I want you to know at the very least that you are not alone. The thoughts eventually quiet and fade – becoming less like rambunctious uncontrollable toddlers and more like almost well-behaved teenagers (ie, pushing the limits every so often but mostly listening to you).

In the meantime, if you’re not up for this piece, go watch this – the official video for the 2015 Climb Out – and see the survivors and fighters who aren’t giving up on any mother still fighting.

Intrusive thoughts, y’all. They’re the bane of so many a new mother’s existence. And yet, we do not talk about them. We still whisper about them, afraid that if we say them out loud they might jump out of our heads and become real, like the monsters and creatures in the Goosebumps series. And nobody wants to have a bunch of creepy monsters running free, right?

There are a few hard and fast rules about intrusive thoughts I realized on my own as well as through researching Postpartum Obsessive Compulsive Disorder. They are:

Most intrusive thoughts are brief and fleeting. They come and then they’re gone. Like a butterfly perching on your finger. Not nearly as beautiful, but they don’t stay long.

You are immediately horrified by the thought perched in your head. This is a healthy response. It doesn’t mean you will follow through with the thought in your head. It’s a sign of being grounded, actually. It’s when you aren’t horrified by the thoughts that you should seek immediate help.

The thoughts fade. For me, the analogy I like to use is that of listening to a song. They start quietly. Then they build to a loud crescendo, eventually cresting, then sliding down into silence. And just as songs are all different lengths, so is the healing process for every woman experiencing intrusive thoughts.

You want numbers about Postpartum Obsessive Compulsive Disorder, the disorder on the spectrum most commonly associated with Intrusive Thoughts? (Postpartum Anxiety can also include intrusive thoughts). According to Postpartum Support International’s fact page on Postpartum Obsessive Compulsive Disorder, 3-5% of new moms will experience this. However, it’s most “misunderstood and misdiagnosed” according to their page as well. I definitely had PP OCD but was diagnosed officially as experiencing a Major Depressive Disorder. Nope. Not what I had, but thanks for playing, doc.

I put on a mask to hide the thoughts swirling about in my own head. It was as if I had my own trippy horror movie marathon running in there. My thoughts centered on knives, as were those of several of the mothers I spoke with. Here’s the thing about these thoughts – when you’re caught inside them, it feels as if you are being swallowed whole, a sentiment echoed by Deborah Rimmler, a member of the Board for Postpartum Progress’ nonprofit.

Deborah QuoteFor Deborah, her thoughts, also centered around knives, started just a few days after she gave birth. She was desperately afraid to be alone with her child and mentioned she was grateful to be fortunate enough to arrange her life so that she didn’t spend a single moment alone with her child until he was at least two. She spent time with him, of course, but made sure that there was always, always someone else with them because she was unable to trust her own brain. Can you imagine? I can – and I will tell you that it is indeed, a special level of hell, particularly when society tells you that maternal instinct will kick in – that it will enable you to love and adore your child. Oh, we love and adore our children. We’re just constantly scared as hell about what our brains are telling us to do to them – or to ourselves. Frankly, it’s exhausting.

Intrusive thoughts, however, according to Deborah, “…are not based in reality – it is a pathological symptom of a disease.” She’s absolutely right. They are symptomatic more than anything else. Being scared like hell of them is a sign of sanity, and one many of us hold onto like hell because in our broken brains, that fear? Is the one thing standing between us and a complete break. It’s so difficult to let go of that fear, which is most certainly a barrier to healing fully.

We talked, Deborah and I, about how healing from intrusive thoughts has two stages. Stage 1 allows you to mute the thoughts, let them fade into the background. Stage 2 is more like PTSD, where we recover from having experienced the thoughts in the first place. It’s a tough recovery, and one we work on for the rest of our lives thanks to the “normal” mom worrying gene – you know, the one that makes you worry about every little thing that can possibly go wrong with your kid or your life. Letting go is key for us once we have healed. We must force ourselves to trust not only ourselves, but those around us as well as society. And that? Is hard.

The dangerous part of intrusive thoughts lies in the shame and stigma still attached to them. Mothers are often frightened to admit they are experiencing them. Why? What happens if your child is harmed? Child services shows up to take them away, right? Our logic is flawed when we are sick, so many of us strongly believe that if we go to someone and tell them we have had thoughts in which we see ourselves harming our children, of course they will take away our child because that’s what needs to happen to keep them safe, right? Truth be told, that’s the last thing we need to happen. Why? Stress makes intrusive thoughts even worse for so many mothers. One of the things I did when I talked with my therapist any time I needed to talk about my intrusive thoughts specifically, was to ask her what she was required to report and what would trigger a report. I would then talk around those – which, yeah, probably not the best thing to do but in my mind? I was protecting my family.

Another dangerous issue at hand with intrusive thoughts is traced to the sensationalism by the media of Postpartum Psychosis. Postpartum OCD feels very similar to the way Psychosis is described. But. When you are fighting OCD? You are grounded. You are horrified by your thoughts. You are not delusional. You’re holding onto sanity with everything you have. With Psychosis, these “thoughts” become your reality and you are moved to act upon them, consequences be damned (or, even scarier – consequences seem to be a relief/escape). Postpartum OCD is not a medical emergency BUT should absolutely be treated by a professional as soon as you feel yourself starting to spiral. Postpartum Psychosis, on the other hand, is ALWAYS ALWAYS ALWAYS a medical emergency and should be treated as soon as possible.

That’s it for today, ladies. I have a LOT more to say so be sure to come back tomorrow for the second part of this post – when we get into the nitty gritty of the range of Intrusive Thoughts with a few tough mamas and what they’ve done to cope with them. Until then, know that you aren’t alone and that it’s okay to talk to someone about these thoughts.

PS. If today’s post has you feeling fragile, please find me on Twitter @unxpctdblessing or email me at mypostpartumvoice(@) gmail.com. I will be happy to talk with you about whatever it is you’re feeling.

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Why No One Invests in Maternal Mental Health

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postpartum depression fundingYesterday I shared some reasons why moms can’t get help for postpartum depression or anxiety. Or depression or anxiety during pregnancy. Or postpartum psychosis or bipolar disorder. And trust me, so many can’t. Today I want to talk about maternal mental health, and why there’s so little investment in the most common complication of childbirth.

The other day I did some quick back of the napkin research. Bear with me, because I really want you to follow along.

There are 1,000 new cases of Cystic fibrosis each year in the US. In 2013 the Cystic Fibrosis Foundation’s revenue was $405 million.

There are 10,000 new cases of multiple sclerosis each year (in men and women) in the US. In 2013 the National Multiple Sclerosis Society’s revenue was $123 million.

There are 16,000 new cases of lupus each year (in men and women) in the US. In 2013, the Lupus Foundation’s revenue was $17 million.

There are 50,000 new cases of HIV infection each year (in men and women) in the US. The AIDS Healthcare Foundation’s revenue in 2014 was $879 million.

There are 60,000 new cases of Parkinson’s disease diagnosed each year (in men and women) in the US. In 2013 the Parkinson’s Disease Foundation’s revenue was $10 million.

There are 150,000 new cases of epilepsy each year (in men and women) in the US. In 2013 the Epilepsy Foundation’s revenue was $15 million.

There are 221,000 new cases of lung cancer each year (in men and women) in the US. In 2014 the American Lung Association’s revenue was $55 million.

There are 230,000 new cases of breast cancer each year in the US. In 2013, the Susan G. Komen Foundation’s revenue was $325 million.

There are 475,000 new cases of Alzheimer’s disease each year (in men and women) in the US. In 2013-14, the Alzheimer’s Foundation’s revenue was $135 million.

There are at minimum 500,000 new cases of postpartum depression each year in the US among women alone. This number only takes into account women who experience live births, and not those who suffer depression after a perinatal loss such as miscarriage. This is an illness which, when untreated, can have a lifetime of consequences for exposed children. And yet there is not a single nonprofit organization dedicated to maternal mental health disorders in America that I’m aware of, including my own, that has annual revenues as high as $500,000. That’s less than a dollar a mom.

Is that a failing of ours? Partially. I’m very new to the whole nonprofit thing, and I’m learning every day. I know I need to tell the maternal mental health story better. I know Postpartum Progress is making an impact, and we’re working to make sure we have the data to show it. I know we need to get in front of more people, and to recruit the involvement of every person who has ever been affected by these illnesses. We need women, business leaders and policy makers to understand that the lack of awareness and treatment for perinatal mood and anxiety disorders is a HUGE public health issue for women and families. It’s leading to a lot of downstream health problems that could be prevented in the first place.

But I also think the lack of investment is an implied endorsement of the stigma of maternal mental illness. I think companies and other potential funders shy away from PPD. I don’t think people want to accept that new moms might be miserably unhappy, scared and sick, despite the fact that 1 in 7 of us are (or 1 in 4 in high poverty areas). I was once told that most of the companies in the ad network this website was part of didn’t want their ads to appear here because they didn’t want to touch PPD “with a ten-foot pole.” It felt like being punched in the gut … I’m one of the “untouchables” they’re so afraid of. What’s interesting about this is that awareness and treatment for PPD can be a very good story. A great story, in fact. We aren’t searching for a cure. We know how to fix it. We know how to talk to women in a way that makes sense to them and makes it safer to reach out for help. We know what works and what doesn’t. Trained providers know how to treat them. This is something you don’t have to hope you can accomplish if someone could just make that eureka discovery. You CAN accomplish it. Now. Today.

And it’s not just the stigma, which is wrong and ridiculous in this day and age, but I also think people look at all those other illnesses I listed above and think, “But no one dies from PPD, so …” That’s simply not true. Suicide is the second leading cause of death in the first year postpartum. And who knows how many attempts there are. We’re just lucky, if you could call it that, that women happen to be three times more likely to make an unsuccessful attempt at suicide than men.

The illnesses and diseases I listed above are serious, and the people who have them need and deserve every cent of the millions of dollars being spent to raise awareness, provide services and support and conduct research. No question. But when you look at the incidence of these illnesses and then you look at the number of new cases of PPD each year and you know how few get treated and you know how much this affects families, don’t you begin to wonder why the inequity?

I know I do.

 

Data Sources:

  • https://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.html
  • http://www.cdc.gov/hiv/statistics/basics.html
  • http://www.pdf.org/en/parkinson_statistics
  • http://www.epilepsy.com/learn/epilepsy-statistics
  • http://www.lung.org/lung-disease/lung-cancer/resources/facts-figures/lung-cancer-fact-sheet.html
  • http://multiplesclerosis.net/what-is-ms/statistics/
  • https://www.alz.org/facts/downloads/facts_figures_2015.pdf
  • https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/
  • http://www.breastcancer.org/symptoms/understand_bc/statistics

Photo credit: ©marine0014/Fotolia

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Why Moms Can’t Get Help for Postpartum Depression & Anxiety

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postpartum depression factsRecently on Twitter I said that a lot of moms can’t get help for postpartum depression and anxiety.  Someone I don’t know chimed in and kept telling me I was completely wrong. She insisted that because of the Affordable Care Act and Mental Health Parity  everyone can get help now. She is not correct on this issue, I assure you. Hundreds of thousands of moms are not getting the professional help they need.

It comes from a place of privilege to be able to say that everyone can get help these days. I used to think that, too. My attitude was, “If you have symptoms of postpartum depression or anxiety, reach out for help. Call your doctor. Get an appointment with a therapist. I did! You can too!”

And then I learned. I learned that some women who have health insurance can’t afford to pay the massive deductibles they’d need to pay out of pocket in order to get mental health care. Some women work the kind of schedules that don’t allow them to see someone for help during normal office hours. Some moms can’t find anyone within a 75-mile radius who is accepting new patients. Some women don’t have transportation or childcare. Some women make calls and find out the people who can actually treat them are so in demand that they don’t accept insurance any longer and if you want to see them you need to be able to pay $150 or $250 an hour out of pocket. Some actually find a person who accepts insurance but then can’t get an appointment until 3 months from now.

Let me make it perfectly clear some of the reasons why women aren’t getting the help they need for maternal mental health disorders:

  • 55% of psychiatrists in America do NOT accept private health insurance or Medicare, and 57% do not accept Medicaid, according to the American Psychiatric Association.
  • Almost 91 million adults live in areas where shortages of mental-health professionals make obtaining treatment difficult, according to the US Department of Health & Human Services, and 55% of the nation’s 3,100 counties have no practicing psychiatrists, psychologists or social workers. Let me repeat: 55% of all the counties in the United States have no practicing psychiatrists, psychologists or social workers.
  • Around 25% of people who have public insurance from one of the state exchanges say they cannot find a therapist or psychiatrist in network, according to NAMI.

One organization in Philadelphia, the Maternity Care Coalition, took a look at whether low-income women can get care and found that it took mothers as long as 22 weeks to receive the care they needed — for those of you who are like me and can’t count that’s five-and-a-half months, y’all — and that only 1 in 5 local agencies had any practitioners who had received specialized training in perinatal psychiatry.

If you imagine that, let’s say, only 50% of moms with perinatal mood and anxiety disorders in the US are getting help — and the truth is it’s less than that but for the sake of argument let’s just say half — that would mean that at least 300,000 American moms each year are struggling and will continue to for who knows how long. That’s 300,000 moms and 300,000 kids (at least, because how many of them have more than one child) being left to suffer the long-term sequences of untreated maternal mental illness. That’s around the same number of people living within the city limits of Boston.

What do we know about untreated perinatal mood and anxiety disorders and their impact on children? We know that untreated maternal depression can create impaired mother-infant bonding, poorer self-control, cognitive development problems, poorer school performance, increased aggression and higher rates of psychiatric illness and substance abuse in exposed children.

So, given all that, you’d think those in power would be falling all over themselves to invest in addressing this issue and making sure women can get help for postpartum depression, anxiety, psychosis and antenatal depression and anxiety, right? Of course they would. Because we know how to help women who are struggling, and when we do help them it helps their kids.

Except nope. There’s actually almost no investment at all. I’ll share more about that tomorrow.

Oh, and P.S. In case you think the access is much better in other countries, read this.

Photo credit: ©B. Wylezich/Fotolia

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