Women Rising®, an 11x award-winning women’s empowerment and media company founded by autoimmune-diagnosed, 15x award-winning documentary filmmaker, Sara Hirsh Bordo, recently released findings from Autoimmunity and the “Good Girls” ™ the first-ever sociological survey exploring the intersection between empowerment and autoimmunity in American women.
The Survey: Autoimmunity and the “Good Girls”
Fielded by the independent research firm PROOF Insights, Autoimmunity and the “Good Girls” ™ surveyed 2,525 U.S. general population women 18 or older to reach 1,000 women who have received at least one autoimmune disease diagnosis. The sample of women screened into the survey aligns demographically with the U.S. census across age, region, ethnicity, income, marital status, and presence of children in the household.
We had the opportunity to speak with Sara about what motivated her to conduct this survey, to learn more about how the survey was conducted, and to better understand the findings. We also spoke about her hopes for the future of women and autoimmune disease.
Women and Autoimmune Disease
According to the Autoimmune Association, there are over 100 autoimmune diseases on record, none with known cures, and women consistently receive 80% percent of the total diagnoses.
Definition of Empowerment: Empowerment defined as self-worth, as recognizing your needs and wants and having the verbal tools to actively bring them into the world. Empowerment defined as being able to receive help without the fear of being a burden, and caring for others without abandoning, neglecting, or betraying yourself.
Definition of Autoimmunity: The Center for Disease Control defines autoimmunity as the immune system attacking itself; because it is not able to distinguish between the “good” and the “bad” cells, the immune system is at war with itself.
Editor’s Note: This article discusses autoimmune diseases and women who were born biological women with two X chromosomes.
Our Conversation with Sara Hirsh Bordo
Sara, thank you so much for talking with us! We are excited to jump into a conversation with you about the findings from your survey. What personal experiences led you to initiate the “Autoimmunity and the Good Girls” study?
How did your own journey with Hashimoto’s disease influence the focus of your research?
When I had a relapse of Hashimoto’s in 2019, as well as a handful of new diagnoses simultaneously, I was motivated to take control of my health in the most empowered way yet. My work as a documentarian and my life with a chronic condition led me to attempt to identify my own underlying factors. I began studying my own health history including outside triggers and trauma, as well as commonalities of fellow Autoimmune-diagnosed women from focus groups and surveys that I conducted independently. What I observed repeatedly, was that we had all been raised as “good” girls, empowered to caretake, but disempowered to safely have and express our own needs.
I might have learned early on how to live around a chronic condition, but all of us are tested in ways that force us to forge even more into our own sovereignty. Sovereignty to me, is being in charge of your own self- living from the inside out instead of the outside in.
For me, I began breaking habits of self-neglect, self-betrayal, and fear of disappointing others once and for all. I learned because I lived it – that the permission to put myself first had the power to keep me well. I knew I had to share this insight and to show it at scale. This is why I funded the AUTOIMMUNITY AND THE “GOOD GIRLS” ™ research – in hopes of supporting other women like me. In our research we found that more than 6 in 10 women with Autoimmune were either the oldest or only daughter, and over half would identify as being a caretaker, too young—-just as I was. I wanted to ask questions that women aren’t often asked about their girlhoods, to gauge the inner story of how women with autoimmune diseases remember the pressures of being a girl in their family. To me, the origin stories are always the most telling.
Can you describe the methodology used in conducting the “Autoimmunity and the Good Girls” survey?
I wanted to work with a partner with a deep bench of consumer experience. PROOF Insights had recently done a fantastic body of research for another female entrepreneur with great success and when I met them, I knew they were the right team for me.
The survey was fielded from November 2nd to November 9th, 2023, to 2,525 U.S. general population women 18 or older and to 1,000 women who have received at least one autoimmune disease diagnosis.
The sample of women screened into the survey aligns demographically with the U.S. census across age, region, ethnicity, income, marital status, and presence of children in the household. Any statistically significant differences among subgroups are noted at the 90% confidence interval with a margin of error +/- 3.9%.
What were the main objectives you hoped to achieve through this research?
The goal of this exploration was to measure the impact of autoimmune diseases among various female groups to determine any interesting linkages with their girlhood and womanhood stories and experiences.
What are some of the most striking findings from your study regarding the link between empowerment, or the lack thereof, and autoimmune diseases in women?
1) More women are being diagnosed with an autoimmune than breast cancer and heart disease combined. Our research showed that 1 in 4 American women have at least one autoimmune illness. These statistics feel like the climate crisis of women’s health. People don’t realize how prevalent autoimmune is in women and the truth is, it is only getting a fraction of the research dollars it needs.
2) Whether it’s autoimmune, neurodivergence, mental illness, or another condition you are afraid to share, everyone has their “something”. These “somethings” are part of who we are. If they cause us to lose workdays, to seek treatment or to focus on self-care it should not be frowned upon- everyone should be encouraged to prioritize their health and wellness. Our survey shows that putting oneself first and making yourself a priority is a vital part of your wellness, although 87% of women who identify as a childhood caretaker said they suppress their own needs because it’s more comfortable being responsible for others. That needs to change.
3) I’ve found in the women that I work with or coach, most women were hard-wired as girls to be “good” by being in service of another’s needs before their own. That means we might need a little extra encouragement to receive help. Try to encourage a woman in your life who may be suffering in silence– mother, wife, sister, daughter – to be open to receiving help and support from others. Our survey said 94% of women who were raised as a caretaker would rather give or caretake, than receive help. Something else that needs to change.
Our survey said 94% of women who were raised as a caretaker would rather give or caretake, than receive help.
Sara hirsh bordo
The study mentions a significant correlation between adverse childhood experiences (ACEs) and autoimmune diseases. Could you elaborate on these findings?
The ACE (Adverse Childhood Experiences) test has been the standard for mapping adverse childhood experiences since the 1990s, so we included those questions as a comparative for our exploration. But we wanted to go further, because it felt necessary to apply a gender lens to adverse life events. It’s no secret that girls are treated differently than boys in childhood. I wanted to see how that different treatment might impact their empowerment and inform the stories their bodies now claim as their own.
ACEs are potentially traumatic events that occur in childhood (0-17 years). Events such as:
– “A parent or adult in my home swore at me, insulted me, or put me down.”
– “I experienced the death of a parent, divorce, or separation.”
-” I felt that no one in my family loved me, or thought I was special.”
We included the questionnaire in our study and the results were clear: women with autoimmune diseases have significantly higher challenges beginning in girlhood.
Can we talk a little bit about correlation not always implying causation. There is apparently a strong correlation between “good girl” syndrome and the development of autoimmune diseases, but are we at the point that we can say we understand the causes?
I am not a clinical psychologist, medical researcher, or physician, so I am not the right person to speak to causality or what we can prove. But one of my advisors and mentors in this work is at Stanford Medical School, and she has encouraged me to use the language “prevalence of exposure.” I believe that what the research and the qualitative work I and others have done, including the published articles from Dr. Kelly Green, a psychologist who I have begun to collaborate with, confirm the prevalence.
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Based on your findings, how do societal expectations and the role of being a “Good Girl” potentially contribute to the prevalence of autoimmune diseases among women?
In my 11 years of documentary work, on stages and screens around the world, and especially with my own health journey, I have seen first-hand how vital empowerment is to women’s well-being. Empowerment defined as self-worth, as recognizing your needs and wants and having the verbal tools to actively bring them into the world. Empowerment defined as being able to receive help without the fear of being a burden, and caring for others without abandoning, neglecting, or betraying yourself.
In their New York Times best-selling book, “The Myth of Normal,” Dr. Gabor Maté and Daniel Maté state, “Time after time it was the ‘nice’ people, the ones who compulsively put others’ expectations and needs ahead of their own and who repressed their so-called negative emotions, who showed up with chronic illness.” The Matés’ “myths” had been my lifelong truths and in 2019, I began to face my own self-neglecting, repressive, “Good Girl” conditioning from childhood, while living with Hashimoto’s disease—an autoimmune disease—for over 17 years.
My work as a documentarian and patient led me to attempt to identify my own underlying factors. During a relapse in late 2019, I began studying my own health history including outside triggers and/or trauma and subsequent personal choices, as well as commonalities of fellow Autoimmune-diagnosed women from focus groups and surveys I conducted independently. What I observed over and over again, was that we had all been raised as “good” girls, empowered to caretake, but disempowered to safely have and express our own needs.
After understanding and beginning to address my own underlying factors, and seeing the effects on my health, I wanted to study these factors at scale.
Autoimmunity means the body cannot recognize or distinguish its own healthy cells from unhealthy cells, leading the body into a war of betrayal against itself. So why are we surprised that adult women’s bodies and immune systems don’t recognize themselves? Their body has never been taught to acknowledge, only to abandon.
What do the survey results suggest about the potential long-term health impacts of gender-specific upbringing?
It is hard not to see that the conditioning of little girls to deprioritize themselves, to neglect themselves, to ignore their own needs, may be yielding an adult body that has simply followed directions to do the same. We saw the prominence of girlhoods of women with autoimmune diseases did not allow for or encourage a sense of self with needs, wants, or an individual identity. The role they played—the identity they embodied—was always tied to being in service to something or someone outside of themselves.
Consistently, women with autoimmune diseases showed that their girlhoods were conditioned to feel it was safer for them to be useful and dutiful than to simply be little girls. Their voices were silenced for want of being “good,” their needs and wants compromised to prioritize their families’ instead. Their bodies learned similar stories from the start: that they were safe when they were self-neglecting, self-betraying, safe when they were self-compromised. To put it succinctly, safe when they were disempowered.
And now, these bodies are living out the story they memorized, but as Autoimmune-diagnosed grown women who don’t know how to self-prioritize or to receive care of any kind.
What are some of the statistics regarding level of education, age, and income? Could it be that there is a certain age and class of women who are more likely to seek medical help, and therefore receive a diagnosis? Please walk us through the numbers.
Andy Stacey, Vice President of Consumer Insights, PROOF Insights answered:
We found that compared to total women 18 and older, women diagnosed with AI are similar demographically by age, employment, education and presence of children in the household, but index higher on household income ($84K for women with AI vs $70K for total women) and being white only (69% for women with AI vs 61% for total women) which could indicate that income and race/ethnicity plays a role in women receiving a diagnosis.
What changes do you hope to see in the medical community, or societal attitudes, as a result of your findings?
Based on the survey results, reading thousands of vulnerable answers to our open-ended questions, and living with an autoimmune disease myself— I would like to share some insights with men supporting women with autoimmune disease:
I would love to see male allies including fathers, brothers, sons, partners, and colleagues be aware and more supportive in the care of women with autoimmune diseases and all chronic conditions. While this can be incredibly difficult in a situation with no cures, often even the most well-intended efforts don’t yield the right comfort and that can be so frustrating. The most important note is to continue, and not give up, and be open to working together to find the right comfort at the right time. As we know, not all help is received equally, but we need our male allies to keep trying. The right support received the right way is possible!
If the survey’s findings extend beyond, there is a massive adult female population that is more afraid to disappoint than they are to do what it takes to take care of themselves.
Sara Hirsh Bordo
If the survey’s findings extend beyond, there is a massive adult female population that is more afraid to disappoint than they are to do what it takes to take care of themselves. If you’ve seen anything in these pages that resonates, from the words of the women themselves or the statistics, the women who identify as a caretaker or a “good” girl since childhood have an additional behavioral obstacle. They all have an incredibly difficult time receiving—with many not able to receive something as minor as a compliment, at all.
Your role in this is CRITICAL. Through your offer of help, you have the ability to invite and to encourage her—even if bit by bit, until she can begin to feel more comfortable receiving your help. Your support with helping her rewrite the story she learned in childhood—that she was only safe and loved when she was GIVING. She needs your reinforcement to feel she can receive help and be loved simultaneously.
Some examples of what this might look like:
- Begin with compliments. In order to help her become comfortable receiving help in big ways, consider supporting her receptivity in smaller ways – such as with verbal compliments.
- Offer her new questions and considerations such as, “what might be helpful to you, today?”
- Not all days require the same help. Invite her to help guide you in supporting her. If she struggles to answer, offer her two options, and let her choose.
- Encourage her through compassionate reminders such as “We all need help sometimes. It’s your turn. Let me help.”
If she responds with, “I don’t need anything,” “Don’t worry about me,” or “I’ve got it myself,” this is your window to compassionately disagree and respond, “Let me try,” and to give her two options. Remember: her fear is that she is a burden. Remind her that she is not.
How can healthcare professionals better support women with autoimmune diseases considering your research?
I invite the medical community to recognize and ultimately embrace the emotional and behavioral nuances of treating female patients who are hard-wired to people-please. Acknowledging their fearful predisposition not to disappoint but to please, even when navigating their own health issues, may benefit from a new approach when connecting with them to ensure they feel safe and heard.
I would like to see the medical community incorporate new questions and onboarding tools into their patient intake practices that would help engage effectively with these patients from the start. With positive health outcomes being the goal of all involved, a heightened commitment to more informed and tailored care would be a powerful step.
Some examples of what this might look like:
- Offer an expanded written inquiry before appointment, potentially inclusive of questions like ours and/or the ACE questionnaire.
- Different in-appointment behaviors such as sitting in a lower chair, instead of above her.
- Offering stories of other women with Autoimmune getting better or living better, as well as any personal anecdotes of women within your own family.
- Updated in-appointment reinforced language such as “I want you well. Help me get you there.” Other examples might be, “There isn’t such a thing as a wrong symptom,” “If what we are trying isn’t making you feel better then, let’s keep trying,” and “I am in this with you.”
- Follow-up check-ins between appointments by text, email, or phone to gauge progress with new reinforced language. You are on the healing journey with them, so let them know they are not in this chronic diagnosis/diagnoses alone.
We have written in the past about the gaslighting that occurs for people within medical offices. For those who might not understand what we mean, we are talking about people experiencing medical issues that are dismissed or downplayed by the medical professionals who they seek help from. Is this something that you have experienced? Did you hear this from women in your study? And did you experience this at all from medical professionals who dismissed the idea of this study?
I would love to give the microphone to the women in my study with this question. Although I was long ago dismissed by my internist, I was able to find a new doctor a few months later who saved my life. My privilege allowed me to put this not-covered-by-insurance, integrative doctor’s care on my credit card.
“I quiet my voice with my doctors because I don’t want to disappoint them.”
female Patient
We asked our 1,000 women about their relationship to their physician and any additional comments they might want to share. Childhood caretakers may become women with autoimmune diseases who: live in fear of disappointing their doctors. 47% of women said, “I quiet my voice with my doctors because I don’t want to disappoint them.”
“Because doctors always made me feel like I was a bother with my health… so I started staying quiet because they wouldn’t listen to me no matter what I said.” 29, Inflammatory bowel disease, Cervical cancer
“When treatments don’t work I feel like it’s somehow my fault and I fear they think I’m not trying to help myself.” 35, Endometriosis
“Many doctors did not believe me when I was telling them on how much pain I was, so I learned to keep quiet and say that I feel fine.” 24, Lupus, Fibromyalgia
“At this moment I don’t feel my group of doctors trust me as a patient. It makes me want to go run and hide. So, present day I don’t say too much- I agree with them and so now I am convinced to [sic] called the good girl. Meaning I do less appointments and don’t send messages any longer.” 34, Endometriosis
“Most of the time doctors get disappointed when we ask lots of questions/ doubt about medicines and side effects…I don’t want them to think about me as a difficult patient and lose interest in my treatment.” 39, Lichen planus, Psoriasis
What has been the most challenging aspect of conducting this study?
Once I decided to fund this myself and I found the right team, the conducting of the study has not been difficult. Once I received the data and the initial highlights (40+ pages of highlights of statistics), I spent roughly three months alone with the numbers and the thousands and thousands of open-ended answers, to organize, write and design what would be the public’s experience of this exploration. As much work as it was, I loved it. I could feel the women speaking, I could sense their lives were similar journeys to my own and those women I knew. There was a gorgeous intimacy about bringing this to life
I have an all-new level of empathy for anyone doing research, albeit research about women’s health and their childhoods, trying to get people’s attention. But carry-on we must, knowing it will reach the right people, somehow.
Are there any additional areas of research you are planning to explore based on the insights gained from this study?
I am really excited to evolve these insights into an experience on film.
What advice would you give to young women regarding empowerment and self-care?
We cannot allow ourselves to continue being more afraid of disappointing others than doing what is needed to begin our own care. Changing my relationship to this construct changed everything for me. This is why I paid for this research out of my own savings—because the women before us didn’t have the awareness and permission we have now—and because the women and girls behind us can and deserve to see what’s possible.
You are worthy of having wants and needs. You are worthy of bringing them out into the world through your voice, and you deserve to have them addressed and fulfilled. Most of us were never told or taught this but we can re-parent ourselves one step at a time. I am living proof that it can be done.
In my research, we saw that girlhood caretakers have a great risk of becoming women with autoimmune diseases who live in fear of disappointing others: 79% of these women said they lived in fear of disappointing others, and 47% of these women said they quiet their voices with their doctors because they don’t want to disappoint them.
It started to become clear to me that the story we tell ourselves is the story our body also learns.
Sara Hirsh Bordo
This is an insight and a truth I was raised with as a half-Lebanese woman growing up in the South. Fear of disappointing anyone, let alone doctors, was a driving force in the way we lived. When I stopped acting the role of the “good girl” and showed my true self, I began to improve and feel better.
It started to become clear to me that the story we tell ourselves is the story our body also learns. When I began to recognize and consider my own needs first, my voice, and my intuition, my health completely began to shift. I hope this can begin a conversation for other women to see the correlation for themselves. Our research showed that 87% of women who were raised as a girlhood caretaker feel they’ve put themselves last without even knowing it.
When we change the way women are empowered and I believe we will change their health.
- I would love to invite you, no matter your age to see that it is never too late to prioritize yourself.
- I would love to invite you to begin acknowledging your body is your partner and not your enemy.
- I would love to invite you to befriend your inner little girl whose turn it never was, until now, to take her turn.
- I would love to invite you, to begin getting comfortable speaking new phrases. Such as “No, thank you, that’s not what I need right now,” “Can I please ask for your help with something” or “I’m hurting. And here is what would be really comforting…”
