The Scary Breast-feeding Disorder People Aren’t Talking About

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When I’m nursing, I feel like a sad shell of myself. Why is that?

If awful thoughts and feelings crop up only when you feed your baby, it’s not postpartum depression, it’s what lactation consultants call dysphoric milk ejection reflex, or D-MER.

Women who have it (and have also read Harry Potter) often describe the experience with a Potterworld reference: It’s as if Dementors are sucking their soul right out of their body, says Alia Macrina, an International Board Certified Lactation Consultant, or IBCLC.

Macrina experienced D-MER when nursing her third child and later created the site d-mer.org to provide information for women, as well as a private Facebook group where they could talk and, more simply, see that they’re not alone.

Women are often told to expect that breast-feeding will bring about warm and fuzzy feelings, thanks to the bonding hormone oxytocin — and most of the time, that’s true. But it’s in stark contrast to what women with D-MER might feel, which can range from sadness to anger to hopelessness.

Macrina, who also worked as a peer lactation counselor for the USDA’s WIC program for six years, says a big part of her job is helping women who are experiencing this feel less isolated. “Really, at this point we’re telling mothers with D-MER that they’re not abnormal,” she says. “Yes, it’s new, and we don’t fully understand it, but there are enough moms out there that it’s another version of normal.”

While some sites have described the condition as rare, Macrina points out that we really can’t say if it’s rare or not because there’s no way to tell how many moms experience it. There are moms who never initiate breast-feeding, or stop after a few days because their milk supply hasn’t increased, or because they feel crappy when doing it and never figure out why. It’s unquantifiable.

There’s been no formal research done on D-MER, but the theory is that dopamine is to blame, she says. Quick biology primer: When a baby suckles, the hormone prolactin rises in order for the body to make more milk. Dopamine, a neurotransmitter, helps control prolactin, and its levels must fall for prolactin to rise, Macrina says. Dopamine stabilizes after prolactin goes up, so most women are blissfully unaware that any of this is happening. But dopamine is also known to affect mood, and Macrina and other lactation experts believe that mothers with D-MER experience dysphoria because dopamine “is behaving somehow inappropriately in its drop.”

Short of having women breast-feed while getting an MRI, we may never know exactly what’s going on. But, anecdotally, it seems that things supporting dopamine levels can help alleviate women’s symptoms. Macrina says that the general consensus among women she’s talked to is that prioritizing self-care helps. But it’s not exactly easy for new moms to get good sleep, keep stress in check, and get dinner with friends.

Macrina says there are three defined severity levels (mild, moderate, and severe) and three spectrums of emotion (despondency, anxiety, and agitation). Some moms have mild cases that go away on their own and others have severe cases in which they have suicidal thoughts while nursing that last until their baby is weaned. It’s not the whole time, it’s just when the milk release (a.k.a. letdown) is triggered, but that can happen as many as 12 times during a feeding session.

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“The majority of the communication I get from mothers isn’t ‘How do I treat this?’ I would say easily 75 percent of it is ‘Thank you so much for this information, I don’t feel crazy anymore,’” she says. “And that’s it — they just want to be seen and heard and that alleviates the intensity of their experience in a lot of ways.”