Women, as well as sex and gender minorities, do not always prioritize wellness and preventative care. 

Gender expression is how an individual expresses their gender to the world, which may be different from sex assigned at birth. Many medical experts today understand gender as existing on a spectrum, and as a social construct. 

Resources

• Learn more about important terms regarding gender.
• Advocate for yourself to your doctor. It’s a learned skill that is key to supporting a patient’s overall health. Get tips from Cedars Sinai.
• Be aware of medical gaslighting. This occurs when a medical provider may not understand or take seriously the concerns a patient is trying to convey. Learn more from the National Institutes of Health. 
• Dr. Sarah Tilstra is a co-author of the first-of-its-kind book, “Sex- and Gender-based Women’s Health: A Practical Guide to Primary Care.” 
• UPMC Health Plan members can search for LGBTQIA+-affirming providers.

For more resources, reach out to Hugh Lane Wellness Foundation, or call 412-973-5053.

Transcript

Dr. Ellen Beckjord: In this episode we talk with Dr. Sarah Tilstra, section chief of women’s health and internist at the General Internal Medicine Clinic at Montefiore Hospital at UPMC, about how sex and gender impact health and health care. Dr. Tilstra, welcome to Good Health, Better World.

Dr. Sarah Tilstra: Thank you so much for having me.

Dr. Ellen Beckjord: Today we’re talking about how sex and gender play a role in health, in health care, and in health disparities. So, as we start, could you please define sex and gender for us and talk about how these terms are used in the health care setting?

Dr. Sarah Tilstra: So, the way that we define gender in the health care world is really, it’s a social construct. It’s on a very long spectrum and it’s not thought to be binary. We used to think of it as very male or female dominant, but people can identify however they want on the gender spectrum and it’s not really up to their health care provider to define that for them. So, when people come into the clinic, we use the terms that they want to use to identify their gender expression and their gender identity. This can be the same or different than their sex assigned at birth. And when it’s different, we say that it’s gender incongruence. So, sex assigned at birth is really defined at birth by usually the provider, oftentimes just by looking at the genitalia, or it can be determined traditionally by ultrasound at about 20 weeks, and that’s by looking at the genitalia. And when we think of gender and sex, they can be congruent or non-congruent.

Dr. Ellen Beckjord: So, I appreciate that you’re helping us understand the distinction between gender and sex assigned at birth. And, as you said, gender is much more fluid, and exists on a continuum … is really, gender identity is determined by the person who’s receiving care in the health care system. 

And, so, you’re, in the context of women’s health, you and your colleagues are taking care of people who identify as female and were assigned, their sex at birth was female. But you’re also taking care of people whose sex assigned at birth might not have been female, but their gender identity is female or is fluid and non-binary. And so those are sort of, I guess, the different permutations that can exist and have to be accounted for now, as you think about how to care for any of your patients, but especially in the context of, I guess, women’s health.

Dr. Sarah Tilstra: Correct. So, when patients come into the clinic, one of the first questions out of the gate that we always ask is, you know, ”What is your chosen name and what are your chosen pronouns? And can you please talk about your gender identity for us?“ And that helps us kind of help take care of them, both from a gender context and from a sex-specific health care context.

Dr. Ellen Beckjord: And if we stick with gender for a moment — and I’ll also be interested to hear you talk about how sex assigned at birth affects different decisions and the care delivery space — but if we talk about gender and we talk about gender roles, thinking about gender, as you said, as a social construct, particularly as they apply to people who identify as women, how do gender roles affect women in the context of their health? I’m sure there’s so many ways, but what are some of the, I guess, first things that come to mind for you as you think about ways that gender roles affect health, particularly for people who identify as female?

Dr. Sarah Tilstra: Yeah. So, traditionally, we think of the gender roles of women being the health care providers. And the good news is that gender roles are becoming a little bit more loose over the years. You know, male parents and male partners are becoming more childcare providers and they’re helping out more around the house. But even if women go into the workforce and work full-time jobs, they’re really still the “on parent.” And we have this concept called the “on parent,” where if you were the “on parent,” you’re still really responsible for the parenting and the driving and the meal prep and the doctor planning and the birthday party planning. 

And when you’re responsible for all of these things in the home, really the things that with your own health care, you kind of lose sight of. And those gender-specific roles that women tend to do really don’t help them get into the clinic and take care of their own health care. 

There’s also this concept that women go through, which is like health care gaslighting. And, so, health care gaslighting in terms of women tend to have a lot more somatic symptoms related to disease than men do. And when they present with chest pain or belly pain or migraine headaches or very nonspecific symptoms, a lot of times they get this feeling from the health care community that it’s all in their head or that it’s related to their hormones. And, so, when they have this experience in health care, they’re much less likely to present the second time around, which clearly affects their health care and delays the time to diagnosis for disease the next time.

Dr. Ellen Beckjord: Yeah, I think it would be great to just unpack what health care gaslighting is and say how it may be at play for women in general, but maybe even more at play for women of color or women who identify as sexual or gender minorities. I’d love to hear more thoughts on that.

Dr. Sarah Tilstra:  So, we are talking about health care gaslighting. And the interesting thing about this is that absolutely it applies to women, but the broader experience is that it applies to other minority groups, women of color, particularly women of color who are pregnant or immediately postpartum, sexual and gender minorities. And I was reading an article recently about Serena Williams and her pregnancy complications and how she had so forcefully advocate for herself to get a CT scan because she knew she had a huge pulmonary embolism, which she had had before. 

And then the recent story of the U.S. Olympic track team, how three of the four Olympic medal winners had had pregnancy complications. And these are star athletes at the prime of their health and they are still experiencing preeclampsia, eclampsia. One recently died.

And, so, the health care gaslighting that these women have experienced, I think is probably twofold. One, I think there’s a bias thinking that these women have really healthy bodies and that we’re just underdiagnosing them because we think that they’re healthy at baseline. But two, that, you know, women come to the table with all of these other somatic complaints that we don’t take seriously, or when women advocate for themselves, they’re being bossy or they’re being … difficult, you know. And sometimes that’s what women have to do to get somebody to listen to them, especially when they’re sick or ill. And health care providers don’t necessarily respond to somebody telling them what to do very often, especially when they have gender or cultural discrepancies in terms of the health care provider relationship.

Dr. Ellen Beckjord: That really feels like a, I suppose, it’s not really a Catch-22, but as you’re talking — I was just having a conversation with a friend of mine about how I think there is also a tendency, and we were sort of talking about psychiatric realm and psychiatric diagnoses, that my perception may not be one that everyone agrees with, is that there’s a long history of pathologizing female experience. And then, at the same time, there is a long history of denying female symptom presentation in the health care setting and that, you know, those two things, it’s sort of like either pathologize and treat or, you know, deny and ignore. 

But, you know, the mix of the two leaves women really in a lurch often when it comes to getting appropriate care for the concerns that they have about their health.

Dr. Sarah Tilstra: Yeah. So, we definitely know that there are some conditions that are sex-related and we know that there are some health care conditions, in which gender and sex absolutely play a role. 

One of these is, you know, coronary disease. And, so, women tend to present later when they have coronary symptoms, they tend to present differently, but they also have sex differences in terms of hormones that absolutely affect their vessels. And, so, while they actually have less atherosclerotic disease in their blood vessels, they often have worse outcomes because of the way that they identify in their gender roles, in who they are. They present later, they’re more stigmatized when they come to the emergency department, they don’t really receive as goal-directed therapy as well as men do, and, so, their outcomes tend to be a little bit worse. Also, COPD tends to be a little bit more severe in women despite lower smoking rates. So, that might just be sex related. You know, autoimmune disease plays a big role in women. Clearly, that could be sex related because it’s more of a physiologic biologic standpoint. Osteoporosis, clearly, with bone disease, you know, hormones absolutely play a big role in that.      

So, a perfect example of a typical female gender role is actually my mother. So, at the age of 50, she had a heart attack, an early heart attack for a woman. And she actually lives two blocks away from me and now she is 75. And, so, she called me one day at 10 p.m. and said, “Sarah, my neck hurts and it feels exactly the way that it did 25 years ago when I had my heart attack.” I said, ”OK, great, let’s go to the E.R.” She goes, “Well, actually it started hurting 10 hours ago and I put a heating pad on it.” I said, “Mom, why did you do that?” And she’s like, “I didn’t — I didn’t want to bother you.“ 

And, so, that’s a perfect example of a woman not wanting to bother her doctor-daughter, who lives two blocks away from her, because she felt that she would be a burden to someone. Even though she actually knew exactly what was going on, and she deferred her health care. And, so, by the time she got to the emergency department, she went for an emergency catheterization and she had a 99 percent blockage in her artery. She did fine. But it’s still — we hear stories like this over and over and over again of women delaying health care.

Dr. Ellen Beckjord: So, here’s a woman who is able to recognize the symptom of neck pain as possibly meaning something very serious related to their heart because of the experience 25 years earlier. And we know that women, as you had mentioned, symptoms associated with coronary disease present differently and may not have the classic, you know, crushing chest pain. So, your mom knows to recognize this neck pain as an important symptom. She has a daughter who’s a physician who lives two blocks away and still delays for almost half a day reaching out to you. And then very fortunately, is able to get the intervention that she needs to save her life. But if it’s that challenging for a woman with as much awareness and resource as your mom, we know that it’s exponentially harder for most people. 

Dr. Sarah Tilstra: Yeah. Exactly. And women are really attached to their provider. And, so, when they have a provider they can confide in and feel that they can trust with their health care, things get a lot better. But when they don’t have that person that they can go to, they tend to defer away from the health care system. We have patients that call in to our clinic all the time, and I’m lucky enough to have 25 female academic women’s health partners. And, so, our clinic is, you know, very, very competent in women’s health care. But when a patient calls in and they can’t see their primary provider, they will sit at home for a week with their heart attack rather than see somebody else for their health care. And that just goes to show that we need better trust in the health care system and we need to do better for these women.​​ 

Dr. Ellen Beckjord: Their relationship with providers is really important. Let me ask you a quick question about the pandemic, and then I’d love to talk with you about your book. But before we go there, you had, I like the term “on parent.” And you gave a long list of ways to identify the “on parent” — who plans the birthday parties, who schedules the health care appointments. You know, I always feel like, who buys the socks, right? Like these sort of edge tasks that always sort of fall to the “on parent.”  

And you mentioned that there has been, and I would agree, I think we can say that we’ve observed some loosening of those gender roles or some emerging equity in tasks shared when there are two parents in a household that there still may be one “on parent,” but there’s been a more equitable distribution of tasks for a lot of modern families. 

But I wonder if you think that the experience of the height of the pandemic set us back a little bit? I mean, I can remember reading in the press and even some research I think that was really documenting — and even before the pandemic, but certainly during the pandemic — that women were disproportionately shouldering the burden of tasks that emerged as a function of the lockdown. And I believe that we know that women disproportionately left the workforce during the pandemic, likely related to having many more tasks to attend to as the quote-unquote “on parent.”  

Was that your observation from the perspective that you are seeing the world — as a provider for women’s health?

Dr. Sarah Tilstra: Absolutely. And that actually still holds true today. And, so, when everyone kind of took a step back from the workforce and almost everybody was working at home, even when dual couples were working at home, it was primarily mom’s job to work from home and do the online school and still order Instacart and still do the things at home that needed to be done while the other co-parent was doing the full-time job at home. And then as people trickled back to the workforce, it was usually mom that deferred out and didn’t necessarily go outside the home. It was also during that time that women had a really hard time taking their kids to the clinic, and so kids weren’t allowed in clinics for two to three years. 

And, so, single parents actually couldn’t go in to get their own health care done unless they got childcare. And that was really an issue when nobody was co-mingling or intermingling and wanted to watch your kids while you went to the doctor or went to the hospital, you know. No mom could go sit in an E.R. for appendicitis because she had childcare. And, so, a lot of things kind of went by the wayside for the pandemic and we’re just now starting to catch up.

Dr. Ellen Beckjord: I’m glad that you mentioned that, because it feels like another example of ways that the experience of the pandemic just intensified or amplified problems that already existed. You know, you had mentioned it wasn’t a new challenge for women and women who are the “on parent” needing to carve out time for their own health and well-being. But what little time they maybe typically had been able to was probably even shrunk even more when so much was happening at the height of the pandemic. So, I appreciate your mentioning that.

Dr. Sarah Tilstra: There are some studies, especially in postpartum care, where online telehealth visits have actually shrunk the disparities in access to care, especially for high-risk women. And, so, that was used as a model to get women back into health care. But there still exists a disparity.

Dr. Ellen Beckjord: Well, let’s talk about your book. So, you are the executive editor of the book Sex- and Gender-Based Women’s Health: A Practical Guide for Primary Care. Inclusive training and guidance for primary care physicians across the spectrum of women’s health is so important. Can you tell us more about this work? What motivated it, and how it’s being used?

Dr. Sarah Tilstra: Yeah, so I’m very lucky to be a part of a national organization called Society of General Internal Medicine, where there is a very large cadre of women’s health educators. And I have to give thanks to one of my mentors, Dr. Melissa McNeil, who has trained a lot of these women’s health educators. And we have sat around for years trying to figure out how to train internal medicine residents, family practice residents, nurse practitioners, better in just primary care, women’s health. And there wasn’t really a resource. And so I did a workshop at a national meeting. I was approached by an editor at Springer saying, “Can you guys come up with a product of your choosing to kind of showcase primary care, women’s health?” And so I contacted a few of my friends, essentially, in women’s health nationally, and we decided to come up with a 39-chapter book with 77 authors from across the nation. And we picked chapters that were based on what we see all the time in primary care, written by primary care doctors of things that primary care people need to know. And so we’re actually really excited about it. It’s been downloaded about 17,000 times by Springer. We use it all the time to teach our residents, and it’s been great.

Dr. Ellen Beckjord: It sounds like it’s really filled a void in the educational space that is really important. It’s been helpful to hear about some of the conditions that were highlighted in your book that really focus on important considerations for women’s health and the importance of having good education and training about women’s health and primary care. But I’d also like to talk about gender and sexual diversity. So, can you talk about health and health care for sexual and gender minorities, which may include individuals who identify as women but may also include individuals who identify as non-binary? 

Dr. Sarah Tilstra: Yeah, so I’ve trained in Pittsburgh my entire medical career, and my reference is training in Pittsburgh and the care that we provide in this community. And, so, I’ll talk about training at our clinic and what we provide for our patients. So, about five or six years ago, my partner, Dr. Ufomata, and I realized that a lot of LGBT patients were coming to our clinic and we weren’t doing a very good job of taking care of them. And, so, over time, we organized many providers in the area from surgical subspecialties, ob-gyn, uro-gyn, endocrine ob to really come together to provide better care for this community of patients because it really takes an entire network of providers to care for the LGBTQ community, especially the transgender community. 

And, so, in the last several years, we’ve seen about 250 new patients in our clinic. We have a lot of friends that provide great care for these patients, and we’re working on getting better services for them through the health plan.

Dr. Ellen Beckjord: That’s wonderful. And so important to know that there’s a commitment to ensuring that safe and trusting relationship that you talked about — being so important for women, but being so important for everyone in the context of health.Dr. Ellen Beckjord: Dr. Tilstra, I’d also like to ask about what you’re feeling most excited about or most hopeful about when it comes to sex and gender and women’s health.

Dr. Sarah Tilstra: So, I think there’s a few things that I’m hopeful about. One is that there’s many, many people interested in being better trained and taking care of the LGBTQIA community, both in the medical school and residency programs. There’s new fellowships as well as other providers in the area, kind of, joining our team to come together to really care for this population. And, so, that’s exciting to see as well as just locally, and at the national level. So that’s No. 1. And then No. 2, I think that over time, some women are going to become better advocates for themselves, and also, for each other. And we’re starting to see that both in health care and in other aspects — you know, the workforce in childcare and their partnerships. And so I think the community is growing up together.

Dr. Ellen Beckjord: Fantastic. Well, Dr. Tilstra, I want to thank you so much for taking time to talk with us on Good Health, Better World about sex and gender and the impact on health. It’s been really wonderful to learn more about the work that you do, and I want to say thank you for the wonderful care that you provide.

Dr. Sarah Tilstra: Thank you so much for having me.

Dr. Ellen Beckjord: Everyone should have easy access to resources that help them navigate their health care journey. Learn more about the specialized services and supports UPMC Health Plan offers to members by visiting the show notes at postindustrial.com/goodhealth.