I’ve been thinking lately about something I read regarding meaning making as humans and how it is deeply personal. The anatomy of how we make meaning out of our lives, events that occur within it, and how we arrive at the conclusion that we have in fact led a meaningful life began to intrigue me and led me to an inquiry about the practice of meaning making.

Consider a significant event in your life. Perhaps it was a singular moment when your inner world aligned with your outer experience. It was possibly a moment when you felt fully present, peaceful, or alive. Or maybe it was something more jarring: the death of someone beloved, a frightening diagnosis, or a traumatic rupture. Whether expansive or destabilizing, experiences like these often initiate the same human response, a search for meaning.

This search is woven into the human condition, it seems. It begins early and persists across the lifespan: from the weary-eyed mother desperately trying to decode the meaning of her newborn’s cries, to the toddler’s relentless “why?” and “what’s that?”. We try to interpret our dreams, make sense of who we are, and at some point most of us have asked, whether quietly or achingly, what gives a life its meaning?

We also see this drive toward meaning-making across many contexts. In therapeutic settings, meaning helps people integrate experiences that might otherwise overwhelm them. In addiction recovery, healing is sustained not only by abstinence, but by story, belonging, and service or by a sense that one’s life can stand for something. In grief, we search for ways to carry loss forward without being defined by it. In rites of passage such as birth, illness, or migration, familiar identities fall away and new ones must be formed.

Across these contexts, meaning-making restores coherence to experience, affirms that lives and stories matter, and keeps people oriented toward relationships beyond the self. When meaning is supported, people endure extraordinary challenges with dignity and connection!

Significance

It seems that the first dimension of meaning making or of answering “am I leading a meaningful life” is in the significance of that life. Most of us want lives that feel significant and want our lives to consist of actions that matter and have real value or impact. But significance alone does not guarantee meaning. For example, I never wanted to be a teacher, yet I fell into education in college and remained there for almost twenty years. That work was unquestionably significant, but it lacked a deeper sense of meaning for me, and eventually I left.

Coherence

This is where coherence becomes essential and seems the next logical piece to the meaning making puzzle. Coherence reflects the extent to which a life decision makes sense within someone’s broader personal, professional, or life narrative. Is this something I always “saw myself doing” or does this choice make sense within the larger sense of who I am?

Purpose

But neither of these two dimensions feel complete without a sense of purpose; the experience of serving something beyond the self. As an educator, I felt that I was “making a difference,” but not on the scale I believed I was being called to and I always felt my purpose, as it were, lay elsewhere.

Meaning-making as a Practice

Meaning-making is a deeply personal practice that evolves over a lifetime; not a destination to which one arrives. Perhaps the most profound mentorship I have received in how meaning making actually works was when I lost my son in 2021.

When he died at just 5 week sold, I felt disoriented by the utter absence of meaning. Why did this happen? What did his death say about me? About the world, the universe, or God?

I lived for a long time with more questions than answers and this incongruence in what happened and what I believed about the way things work was causing a significant amount of distress. I strongly rejected platitudes like “everything happens for a reason” because I needed to understand meaning-making for myself rather than have it ascribed to me.

Like birth itself, meaning is not static. A defining feature of meaning-making is its fluidity. For me, I often revisit it, refine it, and sometimes temporarily suspend it as my life, capacity, and contexts change. I have learned to see this flexibility not as a failure of commitment, but as a source of resilience. It allows me to metabolize loss alongside joy, to grieve what cannot be fixed, and to remain in relationship with meaning over time.

This fluidity has made bereavement more gentle. But the shift occurred only when I realized I was experiencing something deeply human. I was not the first, nor would I be the last to search in this way. For as long as there has been life, there has been death, and more importantly, the existential search to understand both.

Stay tuned for part 2

Nicole Longmire is an IBCLC with over 20 years of experience in education and public health systems. She is a griever, a healer, a creator, a leader, an active community organizer, and a builder of brave spaces. She is the founder of Grassroots Lactation Organizers© . Follow Nicole at www.instagram.com/motheringasmedicine and learn more about the GLO program at www.mothernurtureconsulting.com/pros ←Get on the waitlist for Cohort 2

As a group, we moved through the history of social movements; how an organizing model of change differs from traditional advocacy, service, and education; through narrative story telling and finally into strategy. At the 11th hour I made a bold move that paid off—I used a current real-life crisis hitting the profession as a case study. By having the learners dissect the current insurance crisis with United Healthcare we were able to break down why the existing mobilization around it is incomplete and craft an alternative way of thinking about a solution. Truth be told, we could’ve spent an entire day on it.

But let me back up. Why did I do a workshop on grassroots organizing for lactation consultants anyway? Because I am a leader.

In many ways I’ve always been a leader. I grew up in the south in a middle class, big family. Growing up as the oldest of five children, leadership wasn’t a title given to me; it was more of a daily reality. IYKYK.

As a young adult, it was no surprise when I stepped into leadership roles and for about 20 years, I worked within institutions in education and public health. I learned how to manage systems and people, whether that was by sitting at the heads of tables or standing at the front of classrooms. And I was really good at it. In 2018 when I walked away from traditional leadership and began a career pivot to lactation (by way of early intervention, parenting education, and eventually by completing my LC(CBI) in 2019), I was ready to “not be in charge” anymore. Little did I know that leadership was still going to be part of my world.

And the real test of that leadership came in 2021. I was nearing the finish line of my career pivot into lactation when I experienced a profound tragedy. My newborn son died at just 5 weeks old. Among the countless ways that this rearranged my entire world, professionally, I was faced with a choice: do I let this immense grief consume me and pull me away from the field, or do I channel it into something? I chose to step forward.

But one thing became abundantly clear to me, I wasn’t just here to be a ‘provider’ like I thought (and quite frankly, wanted); I was here to be a change-maker. A leader.

Grief has a profound way of stripping away the non-essential, revealing exactly where your voice and impact are needed most. My perspective changed from what is easiest for me to do to what needs to be done that only I can do.

So when I entered the lactation profession, the veil was lifted before I even had a chance to be enchanted. There were no rose colored glasses anywhere to be found. I thrust myself into the arena (so much so that people are often still shocked I have only been an IBCLC since 2023). And as I looked around, it occurred to me that the problems we are facing call for a new type of leadership. What we were (and are) doing isn’t working. So I went on a quest to find the answer.

That search led me to organizing. I started learning about it by doing it. And then because I am insatiable when it comes to learning, I started down a rabbit hole of studying the history of social movements. I started learning about grassroots organizing and the incredible legacies of movements like the united farmworkers and the Greensboro Four. Imagine my delight when I learned about a group of women who organized in 1985 to build an independent credentialing body, funded by a $40,000 startup loan from La Leche League and literally created a brand new healthcare profession from the kitchen table up! I have organizing in my blood!

And so, armed with an eye for grief, I now see the friction and division in our industry as unexpressed pain, and my leadership is dedicated to building the collective power needed to heal those divisions and drive systemic change.

Ethos in hand, when I first got the idea for my program, I thought people would rush to it. Afterall, I got the continuing education approved, it was something new and different…how could they resist? But it took me months of development and a lot of hustle to get those 9 people in the room. Whether it was time constraints, money concerns, or apathy—people were not running to this workshop like I hoped they would.

But until about halfway though the weekend, I still felt great about having 9.

And then I saw it. In a lactatio billing Facebook group, someone was going to host a virtual call to discuss these very same insurance changes within the lactation community that we had been discussing. Over 100 people had commented with their email addresses, asking to be invited. These people were going to take time out of their day to learn about “the changes and what we can do about it” from a medical biller.

I immediately did two things. First, I turned on notifications for the post—I wanted to track this situation. And second, I got mad. With the stroke of some keys she was able to drum up almost 10x the interest that I had. Yes, there were differences. Yes, she was talking about a one hour call. No money; low stakes. But no continuing education, either. Was that it? Was it a lower commitment time and money wise? If I broke my 8 hour workshop up into bite size pieces, would more people attend?

I think it is because it was frame as an action and in lactation we are all thirsty for action..for doing something. And I get it. As IBCLCs were told to get the letters, that we are the gold standard. That the system wants us. So we did. But they don’t.

And now here we are fighting for our livelihoods, for our patients, and for our work to even be recognized. Our petitions suck because we don’t understand strategy. Our conversations go nowhere because we don’t understand commitment. And so when someone issues a rallying cry, people flock. But we are ‘riding at dawn’ all showing up on a different animal with different tools! It’s like showing up to the sword fight with sticks.

I suddenly felt very “othered.“ I started thinking about all the differences between what I’m offering, and what she’s offering. Immediately started seeing her as opposition, as someone standing in my way. Suffice to say I was big in my feelings.

But then I realized something else. Maybe people are flocking to her because in some way that I haven’t identified yet, this person is also a leader. And so I put on my organizing hat. And I did a third thing. I reached out to her.

We hopped on a video call.

We talked about the UHC situation from both of our (different) lenses. And it occurred to me that as a biller with extensive experience working with and for insurance companies, this person is an ally. And so I did what every good organizer does—started building a relationship and made a plan for us to take action together. And that call? We’re going to host it together.

And this is how organizing works. And why it’s the answer.

Nicole Longmire is an IBCLC with over 20 years of experience in education and public health systems. She is a griever, a healer, a creator, a leader, an active community organizer, and a builder of brave spaces. She is the founder of Grassroots Lactation Organizers© . Follow Nicole at www.instagram.com/motheringasmedicine and learn more about the GLO program at www.mothernurtureconsulting.com/pros ←Get on the waitlist for Cohort 2

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• Scaling up skilled Infant and Young Child Feeding (IYCF) Counseling

• Increasing the implementation of the Baby-Friendly Hospital Initiative (BFHI)

• Continued promotion of National Mass Media Campaigns

• Legislation around the The International Code of Marketing of Breast-milk Substitutes

• The Implementation of Paid Maternity Leave

• Increasing Workplace Breastfeeding Support

Cool. Sounds good enough, right? I mean, none of it is wrong. But did you notice that every single metric and solution highlighted in the World Breastfeeding Week agenda is a system, policy, or programmatic intervention? And yes, we need them all. But we are doing a lot of talking about the mechanics of the machine, while completely omitting the human beings keeping that machine running.

The most telling part of the World Breastfeeding Week agenda is what completely fails to appear on it: us.

For example, the guidelines list “skilled counseling” as a pillar of success, yet there is no mentioned of the skilled professionals who actually deliver that care. But clinical expertise is not a plug-and-play resource, but rather a labor force of real people fighting burnout, low wages, and systemic gatekeeping. Also highlighted is a "warm chain of support" but it frames this chain as an automated, structural pipeline and glosses over the fact that a chain is only as strong as its links. For the lactation provider link, that means facing understaffed hospitals, lack of team based lactation care in communities, poor hand-offs and weak referral systems, and don’t even get me started on insurance reimbursement.

The policy brief also calls on governments to "invest at sufficient scale" in programs like the Baby-Friendly Hospital Initiative (BFHI). But let’s be honest, the focus is still on funding the policy initiative rather than hiring, paying, and protecting the clinical experts needed to run it sustainably.

By treating care as an abstract, nameless asset, institutions profit off our labor while keeping us disconnected and powerless. We cannot strengthen what works if we do not organize the people doing the work.

This structural blind spot is exactly why our traditional advocacy methods keep hitting a wall. Don’t get me wrong, it’s not like we’ve done nothing. But mostly lactation consultants have engaged in what community organizers call mobilizing. Hell, even in pillar 3 the word mobilization is used (A systematic review of 16 studies found that media interventions integrated with counseling and community mobilization increased exclusive breastfeeding by 17%.) But mobilizing is really just us reacting to a system’s decisions but the system as the final authority.

And a system will never care for us. Maybe in theory, but not in practice. A policy brief cannot protect our businesses, and a checklist will never advocate for our credentials.

Only people can do that.

To bridge this gap, we have to stop trying to optimize abstract systems and start building independent worker power. But this requires shifting our entire paradigm from passive advocacy to active organizing.

Community organizing focuses entirely on cultivating leadership, building a community around shared values, and transforming that community’s resources into the power they need to create change. And right now we do not have this.

But does community organizing work? And could it work for us?

So glad you asked! Community organizing works because it acknowledges a fundamental truth that global health metrics leave out: change does not happen because a policy is mathematically proven to be effective. Read it again. Change does not happen because a policy is mathematically proven to be effective. It happens when the people who hold the ultimate leverage decide to organize their collective power.

Not convinced? Good news— you don’t have to look far to see where else the community organizing framework has worked.

This is the exact framework used in the 1960s to turn isolated, transient farmworkers into a powerhouse union that pulled off the historic Delano grape boycott.

It’s the same blueprint used to design the 2008 Obama campaign, dumping top-down corporate ads to let local neighborhoods run their own teams through authentic connection.

From the United We Dream youth movement to healthcare organizing, this pedagogy has a track record of doing one thing beautifully, and that is taking isolated people and turning them into a force that institutions cannot ignore. Don’t we want to be that?

_{Agricultural Workers Organizing Committee members picketing in front of Filipino Community Hall as part of the Delano Grape Strike on September 24, 1965. © Harvey Richards Media Archive}

Imagine for a moment if we used the 58% increase in skilled lactation counseling metric not to justify a hospital’s efficiency, but as the ultimate bargaining chip to prove that our labor is the indispensable foundation of infant health? What if we recognized that hospitals cannot achieve the prestigious 45% Baby Friendly status without our specific credentials, and used that leverage to collectively set our own safe staffing ratios? What if we stopped waiting for top-down, corporate-sponsored ad campaigns and instead organized our own decentralized, grassroots narrative networks to shift public perception from the ground up? What if we transitioned from passively reporting marketing violations to organizing a unified clinical constituency that actively forces our credentialing body to enforce the Code of Professional Conduct? What if lactation professionals stepped out of the clinic to partner directly with broader labor coalitions, organizing parents to demand paid leave as a non-negotiable economic right or organized localized workplace teams to legally enforce comprehensive, dignified lactation protections across every industry?

These "what ifs" don’t have to remain a thought experiment. The only difference between a beautiful idea and a powerful movement is infrastructure.

The clinical leverage is already in our hands. What we need now is the shared vocabulary to coordinate that leverage. We need to know how to make asks that turn passive supporters into committed peers, how to identify the stakeholders and deciders in our communities, and how to tell our stories in a way that shifts institutional power.

We need to turn the resources we have into the power we need.

If you feel called to step out of isolation, take ownership of our profession’s future, and move from an independent advocate to a structural leader, this is your invitation. We are gathering to map out these exact blueprints in the upcoming Grassroots Lactation Organizers Masterclass. This is a hands-on workshop spread out over two days and designed for lactation professionals and birth workers who are ready to learn the foundational skills for building lasting, collective power (and because structural work is real work, yes, you’ll earn continuing education hours for doing it).

I'm in

Systems don’t change. People do. And systems certainly don’t magically optimize themselves no matter how many weeks we devote to them. The only way to truly "strengthen what works" is to organize the people doing the work.

Nicole Longmire is an IBCLC with over 20 years of experience in education and public health systems. She is a griever, a healer, a creator, a leader, an active community organizer, and a builder of brave spaces. She is the founder of Grassroots Lactation Organizers© and the GLO Masterclass ©. Follow Nicole at www.instagram.com/motheringasmedicine and learn more about the GLO Masterclass at www.mothernurtureconsulting.com/pros

When asked why I do this work, I typically default to the origin story that feels palatable: I had a baby. It was hard. I lacked support. I switched careers.

Lactation consulting is great because it gives us a neat cover story about healing our early mothering traumas. But by pivoting to a non-sexual, breast-centered profession, I realize now that I might have actually been embarking on a subconscious reclamation of my own embodiment—one that was lost long before I ever became a mother!

And this is where the potential for a profound generational healing within this work becomes clear. There is a much deeper, older mission of the midlife lactation consultant; restoring safety to our adolescent bodies.

For me, this realization feels like a sudden, rushing exhale (you know the exhale that is so deep your belly actually releases and for a second you stop doing that sucking in thing you’ve been doing for 25 years?).

Every time I sit across from a new mother and watch her safely connect with the functional power of her own body, I now visualize reaching backward through time and offering a lifeline to the 17-year-old version of myself. I visualize telling that teenage girl, who was trapped in a cycle of dissociation and hyper-critical mirror checking, that her body is hers and it’s perfect just the way it is.

In this way, my work has become a dual sanctuary—a space where I guard a new mothers’ right to inhabit her body while quietly allowing the shattered pieces of my own youth to knit back together.

Realizing that supporting a client's physiological autonomy serves as a proxy for healing our own adolescent history is powerful. And I suspect I am not alone in this.

Yet, a dark truth reveals itself the moment we look away from our clients and toward our peers.

The truth is we are living a double reality in this profession. While we might be quietly healing the disembodiment of our youth, we are concurrently weaponizing that same critical energy against each other.

Without realizing it, we have turned our professional spaces into a different kind of panopticon—a system where the fear of constant, invisible surveillance forces people to police themselves out of fear.

The internalized compulsion to constantly monitor our appearance has simply mutated into digital self-policing. Instead of body checking in front of a mirror, we now type, delete, and retype comments in professional groups, often defaulting to anonymous posting to shield our clinical reputation from the hyper-critical gaze of our peers.

_{A panopticon is a prison designed so that one guard can watch all inmates, but the inmates cannot see the guard.}

This is because that same hyper-critical, policing eye that we internalized as teenage girls is being weaponized against our colleagues. The relentless in-fighting, the vicious internet takedowns, and the rigid clinical gatekeeping we practice are not "high standards;” they are the old Y2K script playing out in real-time.

And now we are becoming both the prisoner and the guard.

Ultimately, the maturation of our discipline hinges on our capacity to sever these lingering habits of hyper-vigilance, transforming from a doctrine of constant judgement and suspicion into authentic spaces of solidarity. The tragedy of the whole thing is that by allowing our professional credibility to be mediated by the mechanisms of harm from our youth, we are actively preventing the very healing so many of us came here to find; and are instead allowing this lateral violence to fundamentally stymie our own liberation.

Nicole Longmire is an IBCLC with over 20 years of experience in education and public health systems. She is a griever, a healer, a creator, a leader, an active community organizer, and a builder of brave spaces. She is the founder of Grassroots Lactation Organizers© and the GLO Masterclass ©. Follow Nicole at www.instagram.com/motheringasmedicine.

I have been thinking a lot lately about the ethics of telling our grief stories online. Specifically how we tell them and maybe more importantly, why.

A few weeks ago I was confronted with this ethical dilemma yet again, and while I won’t go into specifics , suffice to say I was impacted as both a fellow griever and a fellow grief worker. It made me think about the space between privacy, omission, and narrative construction and what happens when grief becomes part of one’s branding.

The primary question I have been wrestling with is: What happens when grief moves beyond testimony and becomes part of someone’s professional identity and what responsibilities come with asking someone to trust us because of the things we have survived?

For context not only am I am a griever and a grief worker, I have also spent a lot of time thinking and writing about ethics in birth and lactation work, a space where personal stories are constantly used to establish credibility. I am constantly seeing companies turn vulnerability into marketing and professionals turn trauma into authority and the algorithm, which is extraordinarily good at rewarding suffering, loves it. The issue is the person who has survived something devastating can quickly become an authority on it.

For those of us who choose to undertake any intentional practice, profession, or leadership that helps people make meaning of loss, adapt to life after it, or accompany others through bereavement (aka grief work), we must acknowledge the authority this grants us and be willing to examine how and why we tell our own grief stories. Although grief is a natural human experience and no one owns grief, when it becomes part of the brand, the game changes.

I have spent the last few years being careful about how I tell my own story. Sometimes perhaps too careful. I’ve worried about taking up too much space, or unintentionally minimizing someone else’s loss with the bigness of mine.

When I tell my story, I am always questioning things like is there important context I’m withholding because it is private—or because the ambiguity benefits me? Would I tell the story the same way if there were no professional or financial benefit attached to it? Am I using my grief to establish credibility I haven’t otherwise earned?

I also have to be mindful of who I believe and say I can help. “I’ve been through this” can create connection but it can’t automatically become “therefore, I am uniquely qualified to help you.”

I also often have to check in to be sure I can separate my need to be witnessed from my client’s need to be supported. It’s natural that telling our stories is part of our own meaning-making but my clients shouldn’t have to participate in my meaning-making for me. For me, this is about asking am I telling my story to serve others, or are others serving my story?
Ultimately, I don’t think ethical grief work asks us to hide our stories, sanitize our experiences, or disclose every private detail. But it does ask us to be honest about the power those stories carry.

When our grief becomes part of how we build trust, establish authority, or make a living, we have a responsibility to consider not only what is true, but what we are inviting others to believe and why.

Nicole Longmire is an IBCLC with over 20 years of experience in education and public health systems. She is a griever, a healer, a creator, a leader, an active community organizer, and a builder of brave spaces. She is the founder of Grassroots Lactation Organizers© and the GLO Masterclass ©. Follow Nicole at www.instagram.com/motheringasmedicine.

Nicole Longmire is an IBCLC with over 20 years of experience in education and public health systems. She is a griever, a healer, a creator, a leader, an active community organizer, and a builder of brave spaces. She is the founder of Grassroots Lactation Organizers© and the GLO Masterclass ©. Follow Nicole at www.instagram.com/motheringasmedicine. Learn more about GLO at www.mothernurtureconsulting.com/pros

Bobbie formula publishing their own code of ethics reminds me of when my kids used to fight about games and one of them would declare themselves the winner based on made up rules. Except when my kids did it, nobody’s life was on the line.

Bobbie says “…the United States has never adopted the World Health Organization's International Code of Marketing of Breast-milk Substitutes. That means the responsibility to market infant formula ethically cannot rest solely on regulation, it must also rest on the values of the brands that serve families.”

They go on to detail all the ways they are committed to ethical marketing and even cite the World Health Organization International Code of Marketing of Breastmilk Substitutes. But it’s all a lie. Some of it is an overt, outright mistruth (such as “our content, advertising, and product communication is reviewed to ensure it does not undermine breastfeeding—which they do on the regular) while other elements are designed to mislead (such as “we will not target parents who have not actively sought out formula” but they actively engage in data harvesting the second you engage with one of their influencer posts) and serve as a red-herring distracting away from what is essentially a highly sophisticated marketing funnel disguised a structural advocacy.

The more I think about this, the more enraged I get. Obviously they want this to look like responsible self-regulation, but it’s nothing more than an excuse to bypass international standards and protect corporate profit. Not only are they continuing to systematically reframe the conversation on infant feeding by positioning breastfeeding as a problem that requires a commercial product to solve (and right before World Breastfeeding Month…again!), their “code of ethics“ is strategically designed to create massive legal and marketing loopholes by essentially claiming that the industry can police itself—something we know it has no intentions of actually doing in any meaningful way.

And not only is the audacity, the arrogance, and the blatant disrespect for public health astronomical, formula companies creating their own codes of marketing ethics that say anything other than what WHO Code says is a significant public health concern and a masterclass in narrative capture.

Bobbie is positioning themselves as a corporate savior, lamenting alongside us the lack of parental support systems while quietly ensuring its product is the only accessible solution. And honestly, it would be brilliant if the stakes weren't so devastatingly high.

We are watching a multi-million-dollar corporation write its own hall pass, call it an ‘ethical code,’ and expect us to applaud. Trouble is, some people are. But we must call this what it actually is: a wolf in sheeps clothing. By capturing the narrative, and now on ethics, Bobbie ensures that every systemic failure is re-engineered into a market opportunity. But they don't want to change the world for mothers, at least not enough so that they can no longer profit from how broken it is.

Nicole Longmire is an IBCLC with over 20 years of experience in education and public health systems. She is a griever, a healer, a creator, a leader, an active community organizer, and a builder of brave spaces. She is the founder of Grassroots Lactation Organizers© and the GLO Masterclass ©. Follow Nicole at www.instagram.com/motheringasmedicine. Learn more about GLO at www.mothernurtureconsulting.com/pros

One thing keeps jumping out at me when I read through it all and that is that we are asking the wrong question. We keep asking what instead of who. What are the problems? What is the grievance? What is the issue? And what do we want to do about it? But staying in the what misses a crucial question...the who. Before we ever get to solutions, the questions we need to be asking are who else cares about this? Who has the power to change this? Who is most harmed by this? Who benefits from this staying as is?

To understand why we default so heavily to the “what” instead of the “who,” we have to look closely at the operational frameworks we have been trained to operate within. As healthcare providers, our professional lives are shaped by specific, well-established structures of leadership and institutional problem-solving. However, the tools we use to navigate our daily work are rarely the same tools required to restructure a broken system.

To contextualize this shift from passive venting to active disruption, we must examine the models of change we are most familiar with—service, advocacy, and education—and introduce the missing piece: the organizing model.

In the service model, practiced by local breastfeeding nonprofits or food banks, the theory of change relies on directly helping individuals; success is measured by how many immediate needs are met through clinical care, support groups, or resource provision. The advocacy, seen in paid leave campaigns or ethics reform efforts, operates on the theory that changing rules improves large-scale outcomes, focusing its energy on lobbying, petitions, and media campaigns to achieve institutional policy changes. Meanwhile, the education model aims to change hearts and minds through awareness, operating on the passive assumption that better information leads to better choices—much like the quiet warning labels introduced by the Federal Cigarette Labeling and Advertising Act of 1965.

While organizations like ILCA, USLCA, and NLCA act primarily as membership bodies focused on advocacy, and state breastfeeding coalitions often mix education with advocacy, none of these frameworks tap into the distinct, untaught skills of the organizing model. Unlike a standard membership model that simply asks, “How do we get people to join?”, the organizing model asks, “How do we help people develop enough collective power to change the system they are joining?”

By shifting the core question from what’s wrong to who are the leaders who can create change together, organizing builds the sustainable collective power needed to win campaigns repeatedly. This is the precise skill set lactation consultants lack, and it is the only model capable of transforming online grievances into permanent, systemic victories.

Nicole Longmire is an IBCLC with over 20 years of experience in education and public health systems. She is a griever, a healer, a creator, a leader, an active community organizer, and a builder of brave spaces. She is the founder of Grassroots Lactation Organizers© and the GLO Masterclass ©. Follow Nicole at www.instagram.com/motheringasmedicine. Learn more about GLO at www.mothernurtureconsulting.com/pros

It’s time to start asking how they did it and who is really benefiting here. Spoiler alert—it’s not mothers and babies!

Everything that is happening in the “breast is best” vs. “fed is best” debate is about selective attention—and it is missing the “invisible gorilla” in the room (this comes from the Invisible Gorilla Experiment, a psychological experiment about this selective attention phenomenon, also known as ‘inattentional blindness’)—the infant formula industry. The selective attention (aka distraction) of this arguement creates a shield that directly benefits the predatory formula industry.

While they know their product is not and will never be identical to human milk, the formula industry just needs it to be viewed as identical in value. Look at any comment section on this topic and you’ll see the same retorts—

Nowhere in these comment sections are the arguments about actual science—it’s all about fed vs. not fed. The phrase “fed is best” is used over and over until it completely flattens infant feeding into a binary checkbox where the value is not based on what or how, but if the baby is receiving sustenance.

Ironically, the same year that FIBF was formed, Similac released the infamous “mother hood” commercial.

The complexity lies in the fact that FIBF has convinced us we are having the same conversation when we argue the merits of “breast is best” and “fed is best”. While the first is a phrase born out of a legitimate public health initiative (the Baby Friendly Hospital Initiative and the Breast is Best campaign), the phrase “fed is best” and the FIBF is nothing more than alarmist advocacy masquerading as public health. By tapping into maternal resentment, overlaying it with the most catastrophic stories they could find, and applying an ER mindset (Dr. Christie del Castillo-Hegyi is an emergency room physician, not an epidemiologist) onto public health science, FIBF tricks the public into thinking their platform is a legitimate public health alternative to the “breast is best” messaging of BFHI.

But what is “best” is not defined as perfection for an individual or about personal choice. It is also not defined as the immediate survival strategy in an emergency. Instead, “best” represents the strategy that maximizes the health, longevity, and well-being of the entire population while optimizing resources and systematically minimizing health disparities. While some argue that “fed is best” serves as a message of empathy for mothers, “breast is best” remains an unyielding, literal truth for child survival across most of the globe.

Elevating the worst case, emergency scenarios as common misleads the public and keeps us in a war with each other over what is “best”. And ultimately this serves the infant formula industry the most, who will keep doing what it’s always done…creeping in in their gorilla suits and capitalizing on our division and our distraction, all behind the shield of “fed is best.”

I was 5 weeks postpartum when my baby died. A week later I was handed the Edinburgh Postnatal Depression Scale at my 6-week check up. The first question on the EPDS is “in the last 7 days have you been able to laugh and see the funny side of things” followed by four options ranging from “as much as I ever could” to “not at all.” It was at that moment I knew I was going to have to lie.

Depression is one of the most disabling conditions for women of childbearing age. For women worldwide aged 15–44, it is the second leading cause of total disability. And this is why they screen for it. But when I have just been through the most horrific trauma of my life, asking me 10 questions about my mood, my sleep, and yes even thoughts of self harm felt oddly tone deaf.

What I wanted was someone to fix it.

And if they couldn’t fix it, I wanted them to SAY THAT. It sounds odd but I wanted doctors to stop pretending. I was so sick of the smiles, the sad eyes, the faked optimism. It was nice when there was still a chance but now the incongruence was nauseating. Forget trying to fit a square peg into a round hole; I felt like a blob being squeezed through a meat grinder.

I wanted them to admit they didn’t know anything, admit that this was all just a big guessing game, and admit that this stupid screening was just going to sit in a file. Unless I told the truth, of course…and then they’d probably have me committed. But I had a funeral to plan.

The truth is, if I had answered “yes” to crying, insomnia, or overwhelming sadness, that is actually a completely normal, healthy response to a catastrophic loss. But when scored on a general tool like the EPDS, it is a bit like measuring an earthquake with a thermometer. If I had answered honestly about my deep despair, I was pretty sure it would trigger an immediate, cold mental health crisis protocol rather than the gentle, specialized grief support I actually needed. Also, where are the questions about my real symptoms like hyper vigilance, body numbness, and my frozen nervous system? How shall I score the flashbacks of the long dark hallway and the nurse telling me “everyone’s alone here” as she slammed the door separating me from my partner that I keep experiencing every time I close my eyes? Where would you like me to tell you about how I almost walked out in front of traffic on the way here because I was completely oblivious the light had turned green?

_{I walked to my 6 week appointment from the hotel in Washington DC where we had been living while my baby was in the CICU.}

A couple weeks later, after the funeral, when I was a few days into what I now call my “griefmoon” —the dedicated period of time I took off from normal life to intentionally mourn, process, and physically heal — an OB/GYN was willing to make a house call (I know right!) and actually sat with me while I told my birth story. She screened me with her eyes, her ears, and her heart.

In the years that have passed, and since I now work on the front lines with postpartum women, I have been curious how many other mothers who come to me for lactation help have also lied on their PPD screening. Lo and behold, the data shows that a massive number of mothers deliberately alter their scores on EPDS, with some large-scale clinical studies revealing that up to 50% of mothers actively conceal their symptoms on screening tools. While it might have been a groundbreaking tool for its time, the EPDS was developed in 1987 and is built on an outdated, narrow model of general postpartum depression. Not only is it widely known for “false negatives” due to concealment, it completely misses the mark for mothers navigating birth trauma, infant medical complexity, or neonatal death—all of which applied to me.

In the absence of a better option for screening (there are some other tools out there, including the Perinatal Grief Scale, the City Birth Trauma Scale ) and the lack of collaborative networks of providers to actually provide the support needed beyond screening (I was particularly lucky to have a family connection in order to receive the care of the aforementioned angel of an OB/GYN), many mothers are slipping through the cracks.

All of this begs the question: who’s job is it to screen for mental health in postpartum? Especially in light of astronomically high rates of brith trauma, screening for mental health in postpartum should be a shared, collective responsibility held by every single professional who touches the postpartum family.

The lactation consultant’s role

Because lactation is a neuroendocrine process entirely dependent on the autonomic nervous system, I would argue that a vast number of lactation complications are actually somatic symptoms of birth trauma masquerading as mechanical feeding failures. Whether it’s nipple pain that is being interpreted as a violent assault by her nervous system or the physical sensations of latching a baby that mimic the lack of bodily autonomy experienced during a traumatic delivery, challenges at the breast often reveal deeper truths.

In my work, I have come to see breastfeeding is in itself a screening tool. After all, the lactating body is the ultimate physiological mirror of the nervous system. I have become keenly aware of a mother’s nervous system state just by watching her breath, her shoulders, her upper lip.

Of course, despite the fact that our bodies are shouting the truth through our physiology, an overwhelming majority of traumatized mothers never get the specialized lactation help (and subsequently the mental health support) they actually need, but for those that do it is imperative that we own this part of the continuum. As lactation consultants, we cannot keep pretending that we are just fixing a latch when we are actually often standing in the wreckage of an unhealed birth. And we cannot ignore when we see shutdown happen in real time; as I believe we have the responsibility to change the trajectory of care.

Power #1: Biological norms

Biology is the unmovable baseline that operates on an evolutionary imperative with one metric of success… offspring development and survival. It is an internal, hardwired program that does not care about modern structures, cultural comfort, or hopes and dreams. The prime example of this is the fact that our babies are born neurologically immature compared to other mammals and our biology expects "exterogestation" (a fancy science word for pregnancy outside the womb). Think of your newborn as essentially a displaced fetus for which separation is considered a life threatening abandonment by their nervous system.

Power #2: Cultural norms

Culture is the irresistible force that in many ways is the solution to our displacement at birth (essentially humans have culture and rely on culture because of our biology). Culture is generally understood as everything that is learned from others, which is transmitted repeatedly from one generation to another, and forms accumulations of knowledge and practical skills common to specific social groups. While not an exclusive human phenomenon, no living being depends as much on culture for its survival and reproduction than humans. However, instead of using culture to support biological needs, Western lifestyle treats the newborn not as a biological organism requiring a habitat, but as a lifestyle accessory that must be successfully integrated into an existing matrix of efficiency, productivity, and convenience.

The proxy: Breastfeeding

Breastfeeding becomes the ultimate proxy for this epic war because it is the physical bridge where biology and culture collide. It is not just a mechanism of nutrition; it is a highly visible, time-consuming, and bodily act. This intense biological demand (that most women are doing without the tribal, financial, or societal infrastructure required to sustain it) becomes the battle ground.

The Weapon: Mental health

It’s pretty normalized to see on social media “I stopped breastfeeding for my mental health.” Hot take: talking about breastfeeding and mental health is not a hot take. In fact, this is one of the most direct manifestations of the friction between biology and culture and the Breastfeeding vs. Mental health weapon acts as the ultimate rhetorical nuclear option. Once a mother deploys the phrase "I stopped breastfeeding for my mental health," it immediately shuts down all other arguments, rendering further discussion culturally taboo. Now in checkmate, no one questions the lack of community care or structural support, and instead settle for pathologizing her distress as an individual crisis only solvable by giving up breastfeeding.

But the argument acts as a supreme red herring: it treats the symptoms of a hostile environment as a personal medical defect, often offering a commercial product such as infant formula or other form of “outsource technology” such as sleep training as the only sane escape hatch. It’s no secret that the formula industry is the main funder of this weapon of mass breastfeeding destruction. And most disturbingly, by normalizing breastfeeding as the scapegoat we’ve communicated en masse that blaming breastfeeding is socially safe.

It’s a lot easier to say “breastfeeding is harming my mental health” than to say out loud that your partner is letting you down or you can’t stop the rumination about your traumatic birth. The brain is literally choosing the “breastfeeding is the problem” narrative because it is a path of least emotional resistance.

What’s really happening

Research shows that 20% to 40.6% of women find their childbirth experience psychologically traumatic. That is a huge number of women—approaching half—that are suffering. But we blame breastfeeding. And even if they don’t experience their birth as traumatic, in modern western culture, mothers frequently take on a disproportionate percentage of the executive functioning related to care for the infant. This creates a state of constant high alert where most mothers feel solely responsible for anticipating every need and holding everything together. This type of chronic hypervigilance causes racing thoughts, difficulty sleeping even when you are exhausted, and a persistent sense of unease, often leading to psychological saturation (where the brain simply shuts down). But we blame breastfeeding. Add to it the fact that postpartum mothers have almost no nutrient reserves left and are experiencing the massive hormonal drop of the postpartum period, no wonder her brain's chemistry is physically altered.

If you take any human, traumatize them physically, drain them of all vitamins and iron, force them to make every single life-or-death decision for an infant, they will drown. She isn’t crying just because breastfeeding is hard; she is crying because her biology is at war with her environment. But we blame breastfeeding.

_{Just look at this heartbreaking comment on Instagram on a post about partner support. What do you think will happen next?}

The Paradox

A central paradox of the proxy war is that the exact same biological process that gets blamed for breaking a mothers mental health in a hostile culture is designed to protect her mental health in a supportive habitat. This isn’t to dismiss genuine medical pathology or to reduce this down to an oversimplified piece of biological essentialism—some women do experience real aversion and agitation to breastfeeding in which the physical touch associated with breastfeeding can trigger a sudden, involuntary emotional crisis. However, when we completely flatten the conversation so much that we stop examining the ways in which breastfeeding and mental health can and do coexist, we start actually believing that as a whole, we are uniquely incapable or mentally weak. This suppression of the narrative that breastfeeding can heal ensures that the machine is protected from criticism while women continue to blame themselves and each other and the war wages on.

So what is there to do? I propose four interrelated solutions if we are to ever dismantle the checkmate of “mental health.”

Solution #1

Stop treating breastfeeding as a lifestyle choice and start treating it as a radical, protective ecosystem (for mothers and babies). This means we have to start talking about it differently, with patients, on social media, and IRL. We need less hot takes about breastfeeding and mental health and more stories of how breastfeeding protects, promotes, and supports overall wellbeing both in the short and long term.

Solution #2

Start seeing mental health is the thing that needs intervention and the current cultural escape hatch (stop breastfeeding) as a fraudulent medical treatment. It is like giving a painkiller to someone walking on a broken leg; it masks the agony so they can keep walking, but it doesn’t heal the fracture. This means individual mothers need help reframing their struggles and to be encouraged to see their mental health as an immune system that needs and deserves wellness in order to function in all other areas of mothering.

Solution #3

Start untangling hard things from bad things. In many ways, our culture operates on the flawed premise that a healthy mind requires the elimination of all physical friction. Breastfeeding is hard because it demands physical sacrifice, discipline, and a radical temporary surrender of autonomy. But when supported by a community, a mother who conquers it often builds a visceral, unshakeable sense of self-efficacy and maternal competence.

Solution #4

Start asking better questions. Instead of blaming breastfeeding, we need to be asking what is this hostile environment doing to her that is turning a natural biological antidepressant into a psychological stressor? And if a mother is experiencing breastfeeding challenges, how can we actually get her the support and care she needs instead of getting all squirmy and handing her a can of formula?

It is time to negotiate a peace treaty where mothers don’t have to sacrifice their biology to save their minds and where we stop using breastfeeding as a proxy for the war between biology and culture. But it starts only if we are brave enough to look a little closer at what is actually going on. Mothers haven’t lost the war yet and we aren’t broken, but culture sure is trying.

Nicole Longmire is an IBCLC with over 20 years of experience in education and public health systems. She is a griever, a healer, a creator, a leader, an active community organizer, and a builder of brave spaces. She is the founder of Grassroots Lactation Organizers© and the GLO Masterclass ©. Follow Nicole at www.instagram.com/motheringasmedicine.

However, I was recently engaged in some discourse on one of my Instagram posts in which a non-follower/keyboard warrior accused me of being a right-wing MAHA sympathizing, shame-machine content creator, who obviously hates mothers. (To be fair, I added that last part… ) She was pretty liberal with her F bombs and wasn’t shy about the fact that she felt my choice of the word “prioritize” (to explain how I, a survivor of a traumatic birth in which I almost died from a postpartum hemorrhage and then was airlifted across an ocean so my baby could have open heart surgery and then went back and forth to the CICU every day for 36 days until he died and I pumped the whole time because it was one of my top priorities) obivously meant that I was all of these terrible things. It was abundantly clear that she is an easily triggered, possibly traumatized, and very dysregulated person. And of course it’s not the first time I’ve been villainized in this way and so I honestly was already a little bored with it.

But what was unclear to me at the time (and, yes what kept me hooked) is how she could definitively declare that I was some sort of militant breastfeeding-or-bust psychopath for having the audacity to use the word “prioritize” in the context of meeting one’s breastfeeding goals. Call me curious 🧐! My tertiary Internet search did not bring up anything to support her claims—A.k.a. the word “prioritize“ has not been adopted by MAHA or any other special interest group.

And then I remembered that mothers are constantly being inundated by messages like “you didn’t fail at breastfeeding, the system failed you” and “you can’t tell in the end who was breastfed anyway” which, while well intended, are feeding into the narrative that nothing about breastfeeding is ever in our control and it doesn’t matter that much anyway. These toxic positivity-disguised-as-empowerment statements infantilize mothers, keep them stuck in a cycle of futility and fear, and cause them to do some pretty crazy things out of pure contempt. When you have a baseline belief that your breastfeeding outcomes are not in your control—that it’s something that either works out or doesn’t—and that if it doesn’t, the most important takeaway is that it actually didn’t matter that much anyway, it makes sense why you’d hate my content.

My story (and why I used it in the post)

In the post, I was focusing on maternal grit, self efficacy, and determination as being key factors to meeting one’s breastfeeding goals. In the post, I shared that I was successful in pumping because I prioritized it. Period. None of this to say that a mother who chooses not to breastfeed is a bad mother. But I am saying if she doesn’t prioritize it, no one else will.

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One of the things I find fascinating is how often confirmation bias shows up in motherhood spaces, specifically when it comes to breastfeeding advocacy and support. It usually goes something like this…you have a general belief or assumption about something, how it works, how it operates, what it means and then everything you see gets filtered through that assumption.

For example, if I tell you to come up with a simple sequence of three numbers that follow the same logic as the numbers 2, 4, and 6, what would you say?

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Go ahead, try it.

Think of the sequence I just gave you (2,4,6) and then say outloud another set of three numbers that follow the same logical pattern you identify in my sequence.

Did you say 8, 10, 12? That’s a great guess and you’re right—it does follow the same logic. Now think of another sequence of three.

Go ahead, don’t overthink it.

14, 16, 18? Great! That also does follow the logical pattern.

So now for the moment of truth. What was the pattern?

You might be thinking the pattern is a sequence of three numbers counting by 2s? What if I told you that the sequence 5,7, and 10 also fits the pattern? You see, the pattern wasn’t a sequence of three numbers counting by 2’s. The pattern was three ascending numbers. So in theory, 47, 110, 821 also fit.

So what happened here? This is something called the Wason Rule Discovery Task or the 2-4-6 Task. This is a confirmation bias test that was developed in the 1960s by English cognitive psychologist Peter Wason. It demonstrated how people tend to seek out and test information that confirms their existing beliefs rather than trying to disprove them. Remember, all I gave you was a sequence of numbers, told you there was a pattern, and then asked you to give me another sequence that fit that pattern. Your brain did all the rest!

And our brain loves to do this when it comes to, well…everything! Take this breastfeeding poster:

If your default assumption is that breastfeeding promotion is “pushy” and you saw this in your doctor’s office or local health clinic you might feel that it is pressuring or guilting women to breastfeed. Maybe it would come off to you that it is ignoring or not explicitly naming the challenges of breastfeeding or that for someone women it’s not “worth it”. Or maybe the matching outfits and forced smiles just feel too artificial. Alternatively, you might see this as more neutral, or even as a reprieve from the aggressive “breast is best” campaigns of yesteryear. You might see it as an acknowledgement of hard things being worth it in motherhood in general. In fact, all of these are things many people have said about this poster when I posted about it on my social media. Even though the views were varied they all had one thing in common. They ALL came from white women.

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And while the clinical absurdity here is staggering (as we know, lactation care is, by definition, dyadic and we cannot evaluate milk transfer, assess oral function, track infant weight gain, or fix a painful latch by only looking at one half of the equation), there is a bitter, glaring irony operating right on the surface of this announcement: the company handing down this fractioned, divisive policy is called United Healthcare.

While UHC’s name implies a harmonious, holistic approach to wellness, by actively disuniting the nursing dyad, they are doing the exact opposite. However, this corporate double-speak also calls us toward a bigger, and perhaps even more painful lesson about our own profession. As IBCLCs, we call ourselves a “field” and a “community,” but when push comes to shove, we are also not truly united.

At first, you might be thinking “but wait, what about all the calls to action from my colleagues? What about the outrage on social media? Isn’t that evidence of us coming together?” Sort of. When policy updates like this drop, our instinct is often collective outrage. And listen, I’m a big fan of outrage (and rage in general) when outrageous things happen. Often, we take to Instagram, we vent in private Facebook groups, and we sign the pre-templated group letter. As I said, I am not knocking these tactics—I’m a big fan! It’s really exciting as an IBCLC turned community organizer to see petitions being created, toolkits popping up with templates and calls to action peppering my feed. Don’t get me wrong, it’s exciting to see the mobilization of colleagues across the country because it feels…well…UNITED. But I’m just going to say it now—I don’t think it will work because it’s only half of the equation; yes, like billing for one half of the dyad.

Why mobilizing falls flat

Think of mobilizing like spending money out of a bank account. It draws on our collective outrage, but once that specific crisis passes or people burn out, the account runs dry. When we mobilize our colleagues by saying “sign this letter. Share this Instagram infographic. Flood this inbox today.”, do this THING… it’s still only one half of the equation. Just like you can’t breastfeed a baby without a baby, you can’t mobilize people with out organizing them first, at least not for the long haul. Organizing is building a community that can solve its own problems over the long term where mobilizing is simply gathering a crowd to react to a short-term crisis. One without the other is incomplete. Think about it… organizing a bunch of people to meet once a week and talk about the issues but then who never do anything—that’s a support group. And mobilizing people to do something in crisis is action but it isn’t sustainable and doesn’t build what we really need, which is a movement of highly trained professionals who know exactly how and when to pull the levers of strategic power.

Redefining What it Means to be United

And although we call ourselves a “field” and a “community,” in many ways we are just a collection of independent practitioners, siloed in our settings, watching the floor drop out from beneath us. For example, the vast majority of outpatient lactation care is delivered by solo-preneurs. Private practice IBCLCs operate as tiny, independent islands. When your daily reality is managing your own LLC, fighting insurance rejections alone at your desk, and trying to keep your head above water financially, your immediate neighbor isn’t inherently seen as a colleague but rather as market competition. The capitalist framework of American healthcare forces us into a scarcity mindset, where sharing resources or clients feels like a risk to our own survival rather than an investment in collective power.

Across practice settings and in any example we can think of, the division is a direct symptom of the systemic, economic, and institutional structures under which our profession was born and currently operates. If we want to mobilize effectively, we have to diagnose exactly why we are so disconnected and actively work to deliberately organize ourselves to begin dismantling these structural barriers. The good news is that organizing does not require us to agree on everything. All it requires of us is to agree on a common target and a shared strategy. For example, in labor organizing, workers with wildly different backgrounds and opinions stand together on the picket line because they know individual survival is a myth.

As IBCLCs, we call ourselves a “field” and a “community,” but when push comes to shove, are we truly united? Or are we just a collection of independent practitioners, siloed in our settings, watching the floor drop out from beneath us?

UnitedHealthcare is a permanent, highly structured, multi-billion-dollar corporate machine. We cannot defeat a permanent corporate machine with a temporary mobilization campaign. We must build a permanent machine of our own. Not a pre-built, permanent machine of someone else’s making (top-down solutions are exactly what got us into this mess). We don’t need a single, towering institution to match them; we need a highly trained, decentralized network of professionals who know exactly how and when to pull the levers of strategic power.

And to build this, we have to stop fighting our own civil war and start commanding real leverage. We must learn the science behind strategic community organizing. The good news is that organizing does not require us to agree on everything. All it requires of us is to agree on a common target and a shared strategy. For example, in labor organizing, workers with wildly different backgrounds and opinions stand together on the picket line because they know individual survival is a myth. The truth is this type of organizing is a learned, disciplined skill (much like the physiology of lactation!) and if we can understand the mechanics of how power is built even half as well as we understand the mechanics of infant latch and suck, we can transform the lactation field from a fractured collection of practitioners into an organized, strategic force.

We need a highly trained, decentralized network of professionals who know exactly how and when to pull the levers of strategic power.

So what am I doing about it? Since 2023 I have been intentionally learning about organizing. By organizing.

This is a blurry screen shot of me in fall of 2024 directly confronting the CEO of Bobbie formula over Zoom along with the other members of the Radical Moms Union, a grassroots group I have been part of since 2023.

It took a couple of years of doing the work with Radical Moms Union and then later with the Organizers for Health Justice to make the connection that almost every organizing skill was (and is) learnable by lactation consultants because we already do it in our work with couplets. We already help mothers and babies achieve a shared goal in the face of uncertainty (the organizing definition of leadership) and we move others and ourselves through fear, futility, and confusion on the daily (three of the main barriers to taking organizing action).

Once I put all this together, I decided to found Grassroots Lactation Organizers (GLO) and create the GLO© Masterclass —a workshop built specifically for IBCLCs, (and yes it’s open to birth workers, and doulas too!) to bridge the gap between delivering clinical care and building the professional power necessary to sustain it.

The goal is to study these organizing frameworks, analyze real-world case studies of successful labor and healthcare advocacy, and practice the practical skills of power mapping and relational campaigning. The curriculum is focused on operational strategy (and is approved for 8 CERPs) so that each of us can move from individual practitioner to strategic organizer.

Register for the GLO Masterclass©️

UnitedHealthcare’s corporate branding might be a marketing contradiction, but our solidarity does not have to be. We cannot afford to sit back, sign a passive petition, and hope the system fixes itself. Here’s the harsh truth, the corporate giants are counting on our division. By turning our focus inward, mastering the mechanics of grassroots organization, and learning how to build structured local power, we can change the trajectory of our field.

Nicole Longmire is an IBCLC with over 20 years of experience in education and public health systems. She is an active community organizer and the founder of Grassroots Lactation Organizers© and the GLO Masterclass ©—a platform dedicated to equipping lactation professionals with the fundamentals of grassroots organizing to go from independent practitioners to strategic organizers. Learn more about Nicole’s work and GLO here— www.ibclcglo.com and follow GLO on Instagram at www.instagram.com/ibclc_glo.

A piece of wild art I made about my birth

However, when a year later, I couldn’t go into a grocery store without having a panic attack, I thought I was just broken.  When 3 years in, I couldn't fall asleep without a TV show I had watched hundreds of times in the background, I was confused why I was “not better yet.”  Even today, when crowded rooms start feeling unbearable, or when I struggle to process the email in front of me, I catch myself oscillating between “fuck I really am broken” and brushing it off as just being tired from parenting my living children.  

But slowly, I have begun to wonder: what if surviving profound trauma can actually reshape perception, sensory processing, emotional regulation, and social interaction?  We often talk about the brain as though it exists separately from experience, but childbirth trauma, isolation, medical vulnerability, cultural displacement, and the death of a newborn are not abstract events. They are neurological events and they happened to me; to THIS body and to THIS brain. What if it was my trauma that was rearranging time, altering my nervous system, my relationships, my sense of safety, even the way I was processing sound, touch, conversation, and overwhelm?  

The term neurodiversity was coined by Judy Singer in the late 1990s to describe natural neurological variation, specifically autism spectrum. At that time, the early neurodiversity discourse focused mainly on innate neurodevelopmental differences like autism, ADHD, dyslexia, and Tourette’s. But over time, some advocates and clinicians have expanded the idea to include trauma-related and acquired neurological changes (“acquired neurodivergence”) because we know trauma and injury can (sometimes permanently) alter functioning. This makes sense; afterall, when a human nervous system survives something it was never meant to survive alone, it adapts. These adaptations don’t happen because our brains are broken, but because adaptation is required for survival. 

While “acquired neurodivergence” is not formally recognized by the DSM, what the DSM does acknowledge is that trauma can profoundly alter cognition, sensory processing, emotional regulation, memory, attention, dissociation, social functioning, and nervous system activation. PTSD, especially complex or chronic trauma, can involve hypervigilance, sensory sensitivity, executive dysfunction, emotional overwhelm, shutdown/freeze responses, dissociation, social exhaustion, and altered threat perception. So while the concept of acquired neurodiversity sits somewhat outside the traditional medical framework, it is an emerging and potentially useful conceptual one.

So how could my traumatic birth and my baby’s death lead to the development of acquired neurodiversity? In general, we know that a woman’s birth may be considered traumatic when she experiences intense fear, helplessness, loss of control, violation, abandonment, or threat to her own life or her baby’s life. CHECK. In addition, the hospital environment is often characterized by bright lights, constant noise, and unwanted physical touch which can trigger intense sensory overload.  CHECK. In situations like mine, where there is also cultural displacement and a language barrier, and at the height of the COVID era restrictions in birth centers and hospitals, women risk being belittled, ignored, or uninformed which can lead to feelings of abandonment and fear. This can push a previously regulated nervous system into a state of chronic hyper-arousal, leading to later acquired sensory processing issues, rigid thinking patterns, and executive dysfunction commonly seen in neurodivergent individuals. CHECK, CHECK. Combined with the drastic drop in estrogen following childbirth, which significantly impacts executive functioning even under “normal” circumstances, it seems logical that a traumatic birth experience could unmask neurodivergence, making postpartum mental recovery incredibly difficult.  When then topped with a transcontinental life flight, watching your baby undergo open heart surgery, traveling back and forth in an Uber to spend 12 hours a day at his bedside because there was no room at the inn, culminating in holding him while they took him off life support after 36 days in the CICU, it seems logical that neurological symptoms like time blindness, sensory sensitivities, emotional dysregulation, and brain fog might emerge and act as a “driver” for acquired neurodivergence. CHECK MATE.

But does it matter what we call it? Yes. For one, it might shift our understanding of things like “prolonged grief disorder”, a controversial diagnosis that emerged within the last few years. Maybe what is actually happening is more akin to this acquired neurodivergence? AKA maybe you don’t have a disorder, sis… your brain is just fucking different now.

It is well known and accepted that a neurodivergent brain processes loss and trauma uniquely.  Many individuals may appear unaffected or stoic on the outside due to emotional processing delays or "shunting" (e.g., laughing or using morbid humor to regulate intense panic). Executive functions may temporarily collapse, and routine tasks can become completely overwhelming. Individuals may experience severe physical symptoms like tics, extreme fatigue, or intense physical reactions to sensory triggers that they associate with the loss. It may also explain what is happening long after the traditional grief symptoms wane but …something persists. 

And secondly, this distinction also reveals an important gap between being trauma-aware and disability-aware. Trauma-aware care asks: What happened to this person, and how might their nervous system be protecting them? It focuses on understanding survival responses and avoiding re-traumatization. Disability-aware care asks a different question: What barriers are preventing this person from functioning or participating fully?

Disability-aware care recognizes that some neurological changes may not be temporary, and that support may require accommodation, not simply recovery. This matters deeply in conversations about birth trauma and neonatal loss, because many grieving parents are treated as though they are merely “not healed yet,” rather than people whose nervous systems may have been fundamentally altered by profound trauma.

What I am describing here is not an argument for a new formal diagnosis, nor an attempt to further pathologize grief but rather an invitation to widen the conversation around what profound trauma does to the human nervous system, especially in mothers navigating birth trauma and neonatal loss. For myself, acquired neurodivergence has offered language for experiences that I was struggling to explain: why the world suddenly felt too loud, too fast, too demanding; why ordinary tasks became neurologically exhausting; why safety, focus, memory, and sensory processing no longer function the way they once did inside my body. And yes, why I still need the TV to fall asleep. If trauma can reshape the brain in enduring ways, then healing may not always mean “returning” to who we were before. And perhaps we should begin asking what it means to support nervous systems that adapted exactly as they were designed to in the face of unbearable trauma so that we can move beyond treating trauma as something temporary to “recover from,” and move toward an understanding that that some differences may be enduring and require ongoing accommodation rather than normalization.

Nicole Longmire is a creator, lactation consultant, leader, and builder of brave spaces. Exploring the untamed terrain of motherhood, grief, embodiment, systems change, and collective care through essays, stories, and cultural critique.