Below, Sara Hirsh Bordo shares five key insights from her new book, Autoimmunity and the Good Girls: How Permission to Put Ourselves First Has the Power to Keep Us Well.
Sara is an award-winning documentary filmmaker of women and girls’ stories, as well as founder of the empowerment production company Women Rising. She is currently the director of the Everyday Heroes documentary series for Toyota and espnW and a consulting producer of the ConnectHER Film Festival. Previously, she was executive director of interactive marketing at Paramount Pictures and VP of digital marketing at MGM Studios.
What’s the big idea?
Chronic illness in many women is linked to a lifetime of suppressing their authentic selves. Healing begins when they reclaim permission to be who they truly are. Immunity is shaped not only along the lines of science but also along the thread of story.
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1. A self in compromise creates an immune system in compromise.
Growing up as the oldest and only daughter on our side of a big Texan and Lebanese family, I was raised in the traditional manner: to be the ultimate good girl. When you are told to be a “good girl” or a mommy-and-daddy’s helper, you are conditioned to play a role that ties your power to your ability to please. And if the outside world controls what makes you feel loved and safe before your own sense of self has had a chance to develop authentically, a personal disconnect is born. I invite you to consider that this dynamic is keeping well-behaved women dutiful, self-abandoned, and sick.
Within 18 months of my 42nd birthday, I was diagnosed with melanoma, multiple breast and ovarian tumors, active Epstein-Barr, heavy metal poisoning, and mold poisoning, in addition to debilitating flare-ups of the autoimmune disease Hashimoto’s, which I was diagnosed with at age 30.
In autoimmune diseases, the body goes to war with itself because it cannot recognize or distinguish its own healthy cells from its unhealthy ones. From multiple sclerosis to lupus, rheumatoid arthritis, fibromyalgia, irritable bowel syndrome, Raynaud’s phenomenon, Graves’ disease, my personal diagnosis of Hashimoto’s, and over 100 other autoimmune conditions where 80 percent of the patients are women.
I started noticing anecdotally that everyone around me who was diagnosed with an autoimmune illness was either the eldest or the only daughter, all playing a role to “be good.” I found that fascinating. And as I was first locked in COVID quarantine, in a body riddled with diagnoses, I wrote this first question on my wall: “If not knowing myself made me sick, then maybe knowing who I am can get me well?”
“This dynamic is keeping well-behaved women dutiful, self-abandoned, and sick.”
From 1:1 conversations to focus groups to online surveys, and then to my own commissioned national research, echoes began to ricochet. 63 percent of women with autoimmune diseases were either the only or the oldest daughter in their family. Of the women who grew up as the primary childhood caretaker, 84 percent said, “I find it uncomfortable to receive help, compliments, or generosity,” and 79 percent said, “I quiet my own pain or suffering because I don’t want to be too much trouble.”
I believe that a dissociated girlhood identity dedicated to being ‘good’ instead of being ‘true’ yielded an adult immune system that simply followed directions to do the same: to not recognize itself. The conditioning of little good girls—raised to deprioritize ourselves, neglect ourselves, and ignore our own needs—may be creating a girlhood identity crisis.
Good girls and consummate caretakers are getting sick first, staying sick the longest, and having the hardest time getting well. As a recovering good girl myself, what I discovered in healing my own autoimmune disease is that the factor missing in my illness was found in my wellness. Reclaiming myself and my empowerment reclaimed my health.
The immune system doesn’t just speak science; it speaks story. I’m calling it the Identity Immunity story, and it’s in the shape of a pyramid. Allow me to give you a guided tour.
2. Permission.
Within a framework of natural evolution, our resources, skills, and senses should be built upon one another, extending and strengthening upward. We would like to believe that in the journey of life, we’re born on the ground floor and ascend with wisdom and self-mastery toward the penthouse. But the building blocks of self aren’t always experienced, or even available, in a linear upward order for us to construct our sense of self as we go—especially if we were raised by those who were missing pieces of their own selves.
Simultaneously, we know that while our body is keeping score, our immunity is listening to how we define the game itself. When our Identity and our Immunity are in a relationship within the same set of rules, there is greater health. When they are out of harmony, and we are living against ourselves through neglect, abandonment, or betrayal, we contribute to creating an Identity out of balance, in distress, and sometimes at war with itself.
Within the Identity and Immunity story, I have observed four key aspects across women and our health that will forever be weaving themselves upward, downward, and through:
- Permission
- Epigenetics
- Authenticity
- Coherence
At the base of the pyramid is Permission. Think of Permission as our baseline world of truths, born from the stories we are told about who we can safely be. As little girls, we naturally test the limits of our permission: just how much we are allowed to color outside of the lines, just how loud can we speak, just how independent we are permitted to be. Once we know the answers, these coordinates are set within us as baseline.
A common theme among many of us with chronic conditions and autoimmune diseases is a lack of self-permission. Many of us were given the limited container to be only one way: the way our family needed and guided us to be. Caretaker-conditioned girls like us learned that Permission was a default operating system and relationship language that relied on a catalyst or reaction to another, rather than a sovereignty originating in ourselves. Now, as women, we wait for permission before speaking. We raise our hands in conference rooms and quiet our voices in relationships. As good-girl caretakers, our safety in ourselves is determined in relation to the allowance from the outside in, instead of the inside out.
The first step of my healing was realizing that I had to grant myself basic but profound permission to self-originate. When my natural state of self-permission changed, this is when my immune system first received a new message. The rules and reality of who I was started to shift from the inside, and my inflammation began to reduce.
3. Epigenetics.
Epigenetics is the study of how environmental influences, including childhood experiences, can affect gene expression. As Harvard’s Center on the Developing Child explains, during development, the DNA that makes up our genes accumulates chemical marks that determine how much or how little of the genes are expressed. This collection of chemical marks is known as the epigenome. The epigenome can be affected by positive experiences, such as supportive relationships and opportunities for learning, as well as negative influences, such as environmental toxins or stressful life circumstances.
Think about this as happenings outside of a body. Your DNA itself is not altered, but the way your genes are turned on or off is affected. If Permission is the rules of the game, Epigenetics is the referee. For this reason, Epigenetics is the second level of our Identity-Immunity tale.
“If Permission is the rules of the game, Epigenetics is the referee.”
Both the initial experience and the body’s memory of our childhood and girlhood experiences can affect your genetic code: from having a parent or adult in your home who swore at you or insulted you, to experiencing a divorce or separation, to experiencing unwanted sexual contact, or being hit or physically hurt. How we were treated by and in our environment is scientifically proven to affect our health. As little girls, we had no or little way of escaping a situation that made us feel unsafe or unwell.
When we leave our childhood rules of home, we cross from girlhood to womanhood. We finally become responsible for getting ourselves out of environments that limit us or make us feel triggered or symptomatic. We get glimpses of limitlessness that allow us, through trial and error, to create a less triggered, less symptomatic life.
4. Authenticity.
As Brené Brown writes in The Gifts of Imperfection, “Authenticity is the daily practice of letting go of who we think we’re supposed to be and embracing who we are.” If Permission is the rules we were given for a game, and Epigenetics is the referee, Authenticity is the field of play.
I like to think of Authenticity as a series of compounded opportunities and choices we make and live, one at a time, from a true place. From our hearts, not our fears, and not the character version of us that our Permissions and our Epigenetics shaped us to be.
In my interviews, I asked multiple caretaker-raised women with autoimmune diagnoses a simple question that proved hard to answer. I have deep compassion for answering this question because I did battle with it myself when I became so sick: In your life, who knows the real you? The answers were consistently difficult to provide, and the names were few, if any.
What I saw in my own life was that I couldn’t live from authentic choices if I didn’t know where authenticity lived or what authenticity felt like within me. I couldn’t know because I hadn’t been taught or invited to do that. This is true of most of us caretakers and eldest daughters, so we must rebuild by starting where we began: finally giving the little girls inside us their turn to have needs and wants, and to receive help.
I had been traveling internationally alone for many years, and in the container of vacation, I found it much more comfortable to receive and self-prioritize authentically. It felt like a well- earned reward. But when I began, through clumsy trial and error at the age of 44, to search for my authenticity at home, it was months of awkward first dates with myself asking questions like:
- How do I look after myself when I am home alone?
- How do I give myself full permission to just be?
- How am I kind to myself when I am alone?
- How do I choose what experience makes me feel safest?
When we live for the first time with absolute self- permission in our daily lives—from autonomy in our environment, power in our voice, and license to disappoint those around us, however frightening, uncomfortable, and clumsy—that’s where our immune system sighs with relief.
5. Coherence.
What I have observed in my own health, echoed by hundreds of autoimmune-diagnosed women, is that at a point in our girlhoods, we went from little girls to little-girl caretakers. We replaced a sense of self with a character to play (Permission), and that character graduated to progressively larger aprons in each new environment (Epigenetics). Our default self became one of compliance and servitude rather than individuality and personality (Authenticity). Through it all, our immune system was listening to every single word, turning some genes on and shutting others off in response to our lived experiences and every choice that shaped them.
But thankfully, I have also experienced with my own health and observed in others that a coveted pinnacle of the journey awaits. It is possible to go from neglecting to honoring ourselves through long-awaited self-permission. To start creating the environment we need, setting boundaries, and working on healing through harnessing the power rather than the punishment of Epigenetics. To begin living from a true intuitive embodiment of and for our own Authenticity instead of for solely another’s needs or desires. When we arrive here, at this hard-earned apex of our own heroine’s journey, we have reclaimed our birthright of power in a life of Coherence.
“Coherence is when Permission, Epigenetics, and Authenticity are self-harnessed, transforming their girlhood power over us into our womanhood power through them.”
If Permission is the rules we were given for a game, Epigenetics our referee, and Authenticity our field of play, then Coherence is our goal.
In 2019, the NIH published the results of a study from Italy aimed at examining the relationship between a sense of coherence and physical health in patients suffering from chronic illnesses. The study defined the sense of coherence as “a dispositional orientation that allows individuals to be more resilient to stressors in daily life, stay well and improve their health.” The results and conclusions were simple: Coherence “impacts patients’ mental health status, which in turn affects physical health.”
If we agree that you cannot separate the connection and effects of mind on body, then I have proposed the following through my book: Coherence is when Permission, Epigenetics, and Authenticity are self-harnessed, transforming their girlhood power over us into our womanhood power through them. This empowerment is the missing modality in women’s health.
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