Taking Care of You
with Mary O'Connor And
Kanwal HaQ
Women don't always receive the same healthcare as men.
In fact, for too long medicine has not recognized that numerous health conditions — like heart disease, stroke, stress, mental health and more — impact women differently than men.
Orthopedic surgeon Mary I. O’Connor and medical anthropologist Kanwal L. Haq want to change that by empowering women with knowledge about the current landscape of women’s health, and showing them how to actively engage with their healthcare team.
Listen into this week's episode as they share how to advocate for our health needs, in a system that isn't always set up to support you.
Listen below, or tune in via: Apple Podcasts,Stitcher or Spotify.
complete transcript below.
In this episode you'll discover
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Women do not always receive the same healthcare as men.
In fact, for too long medicine has not recognized that numerous health conditions — like heart disease, stroke, stress, mental health and more — impact women differently than men.
Orthopedic surgeon Mary I. O’Connor and medical anthropologist Kanwal L. Haq want to change that by empowering women with knowledge about the current landscape of women’s health, and showing them how to actively engage with their healthcare team.
In a groundbreaking publication, Taking Care of You: The Empowered Woman’s Guide to Better Health, O’Connor and Haq have enlisted 111 leading women physicians and health experts from all across the country to create a practical resource guide for women to improve their health and obtain better healthcare.
Taking Care of You is refreshingly supportive and jargon-free, with colorful illustrations to help the reader better understand what can often be dense medical information.
Its unique approach includes three main sections:
WOMEN AND THE CURRENT HEALTH LANDSCAPE includes topics like:
* What exactly is “women’s health”
* How to find the right healthcare team
* How to use the internet for medical information
* When to go to urgent care versus the emergency department
* And much more
COMMON CLINICAL CONDITIONS IMPACTING WOMEN focuses on 55 non-reproductive clinical conditions that impact women more than men, or differently than men.
They include:
* Breast, lung, cervical, and ovarian cancer
* High blood pressure, cholesterol, blood clots and stroke
* Anxiety, depression, obesity and metabolic syndrome
* Thyroid disease, chronic fatigue syndrome, lupus, multiple sclerosis, rheumatoid arthritis
* Painful sex, pelvic inflammatory disease, polycystic ovary syndrome, urinary tract infection and incontinence, uterine fibroids and abnormal vaginal bleeding
Each chapter is divided into subsections that explain:
* What is the condition?
* Can it be prevented?
* How is it treated? Why does it matter to women? (Including differences related to sex, race and ethnicity)
* Questions to ask your clinician and healthcare team
* Pearls of wisdom from clinical experts
Taking Care of You focuses on activities women can do everyday — like eating well, sleeping and exercising — and how to effectively engage in these pillars of health to take better care of themselves.
Taking Care of You is an easy-to-use and accessible guide to be shared between mother and daughter, sister, aunt, and grandmother — an essential resource for every woman, and those who love her.
More about Mary O'Connor:
Mary I. O’Connor, MD is an internationally recognized orthopedic surgeon and health equity leader. She is co-founder and Chief Medical Officer of Vori Health, a virtual musculoskeletal medical practice delivering an innovative model of patient care to empower humanity to better health.
In a profession dominated by white males, Dr. O’Connor broke numerous glass ceilings. Her distinguished academic career includes over 200 peer-reviewed publications and 350+ academic presentations. Dr. O’Connor is Professor Emerita at Mayo Clinic, where she served as the Chair of the Orthopedic Department at Mayo Clinic in Florida and was awarded the Distinguished Clinician Award. She is past Professor of Orthopaedics and Rehabilitation at Yale School of Medicine and directed Yale’s Center for Musculoskeletal Care.
Dr. O’Connor’s championing of women began as an undergraduate at Yale. In 1976, she and her rowing teammates protested the lack of women’s facilities at the boathouse in what has been heralded as the first stand for gender equality in college athletics.
In 1979, Dr. O’Connor went on to stroke the Yale Women’s Varsity Eight to a national championship and the U.S. National Team Women’s Eight to a bronze medal at the World Rowing Championships. She was a member of the 1980 U.S. Olympic Team (Women’s Rowing).
Having seen the bias that women, people of color, and other marginalized groups experience in healthcare, Dr. O’Connor has fought tirelessly to advocate for quality care for all. She has led Movement is Life, a national non-profit health equity coalition, since its inception in 2010. Next to caring for the patients she has had the privilege to serve, she considers her greatest professional achievements to be advancing health equity and diversity in medicine.
More about Kanwal Haq:
Kanwal has been an activist long before she knew what the term meant. In kindergarten, she repeatedly threw away her uncle’s hidden cigarettes; when he tried to divert her cause with a visit to SeaWorld, she used the entire trip to protest “Free Willy!” …and then threw away his cigarettes.
Since then Kanwal has learned to use more successful approaches to effect change. She completed her B.S. in biological sciences from the University of Missouri, her M.S. in medical anthropology from Boston University School of Medicine, and worked at the Centre Hospitalier Universitaire de Kigali, Americorps, the United Nations, and Yale School of Medicine. Kanwal currently leads the NYC women’s health programs at Mount Sinai Icahn School of Medicine’s Arnhold Institute for Global Health.
An applied-research scientist dedicated to education and health equity, Kanwal utilizes community-based participatory research and implementation science to build more effective, efficient, and equitable systems of care. Her desire to bridge the gap between academic knowledge and community resources served as the catalyst for “Taking Care of You”.
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EPISODE 238: with Mary O’Connor and Kanwal Haq
[Fun, Empowering Music]
Amanda Testa: Hello, and welcome to the Find Your Feminine Fire podcast. I am your host, Amanda Testa. I am a sex, love, and relationship coach, and in this podcast, my guests and I talk sex, love, and relationships, and everything that lights you up from the inside out. Welcome!
Women do not always receive the same healthcare as men. In fact, for far too long, medicine has not recognized that numerous health conditions (such as heart disease, stroke, stress, mental health, and more) impact women differently than me.
So, today, I’m super excited to have on the podcast orthopedic surgeon, Mary O’Connor and medical anthropologist Kanwal Haq to talk about their new book called Taking Care of You and, really, how it can help empower women to advocate for your own health in this environment where the system might not always be set up to support you.
So, welcome! Thank you both so much for being here. I’d love to start off by saying thank you for the work that you're doing and for writing this book.
1:01
Mary O’Connor: Oh, Amanda. That’s so gracious of you, and we are just delighted to be with you on this podcast and hopefully empowering your listeners about the importance of women, in particular, being strong advocates for their own health.
Amanda Testa: Yes, this is something that I learned far too late in life, and actually, my husband is in the medical profession, and so, he is the one that really got me advocating for myself when, in the past, I probably would just go along with whatever my doctor said or not even really search out alternative solutions. So, I think it’s so important, and I’d love if you would share a little bit about what inspired you two to pair up to write this book to begin that.
Kanwal Haq: Sure, so I can start that, and, Amanda, thank you so much for having us and thank you so much for the work that you are doing.
How I got connected with Mary was while I was at Yale. I had just started, and I actually had been following Mary’s work. She’s been in the health equity space for quite some time, and I was a little bit starstruck.
2:05
It took me a while before I reached out, and she always kind of rolls her eyes when I say this, but she has really done some amazing work.
And so, while I was there, I was kind of running into some health issues of my own, and there was just a lot I was learning working within the system, and so, when I reached out to Mary, we kind of started talking about this, and we had a lot to talk about. Mary was like, “We should write a book!” That’s kind of how it started, and it was very organic in the process, and kind of just about what we both care about. Mary, if you want to add to that.
Mary O’Connor: I’d had this idea for a book for a while, mostly because I was just so tired of having women come in to see me as patients and recognize that they really hadn’t received great care, and that communication with their orthopedic surgeon hadn’t been great, and that’s to the detriment of the patient, essentially.
3:03
So, I was like I should really write a book, but I knew that if I had a partner to do it with that one, we’d probably get it done, and it would be a lot more fun to go through this process. And it has been, and now I have this incredible friend, and we’ve created this book that we’re very proud of. And so, now, we’re trying to get it out into the hands of women so that they can use it to have better health.
Amanda Testa: And I’m curious. If you wouldn't mind sharing a little bit about what are some of the challenges on our current health landscape that people might not even be aware of. If you could share a little more.
Mary O’Connor: I’ll start with one, and then Kanwal can certainly add others. I think that one of the biggest challenges is that -- this is a general statement, and I know I’m stereotyping here. So there’s always going to be exceptions to these statements but, in general, doctors don't listen to women, and doctors assume that women are exaggerating their symptoms because we are in a society where that is the stereotype, where women say their pain is nine out of ten, and a man says his pain is nine out of ten, and the health provider is more inclined to believe that the man is in miserable pain but the woman is exaggerating, right?
4:25
She’s somehow along the hysteria line, and so, her symptoms are not taken at face value because we minimize, we diminish the voice of the woman as a patient. We discredit the information that she is sharing with us, saying, “Well, it’s really not that bad. She’s exaggerating.” And this harms women.
Amanda Testa: That’s huge. I’m just laughing -- not laughing, but just thinking of one experience in particular that I had with a previous dermatologist that I was like how have you been doing this for 20-something years?
5:00
Anyways! But, yeah, and so, I know that there are a lot of other issues that can come to play around that, but what I'm curious is if you're coming in from the patient’s standpoint and you really want to make sure that you are taken seriously, what is it that you need to do so that you're not being diminished in what you’re sharing and what your symptoms are?
Kanwal Haq: Yeah, and I think, for that, that’s really why, for this book, we wanted to kind of create a tool that was easy to use, that women could pick up. Like they’ve got a doctor’s appointment and they can kind of pick this up right before and flip through it. Let’s say you're experiencing back pain. You can turn to the chapter on back pain, and it’s gonna explain what is this condition, how can it be prevented, how is it treated, why it matters to women. So what are those differences between men and women. A lot of times, we do experience these symptoms differently, and then what we think are really essential questions to ask your healthcare team ‘cause a lot of times we talk into that conversation and we might be prepared to say, “I have back pain, and I’ve been having it for X, Y, and Z,” but that’s it.
6:07
We might not know which questions to ask or how to get the most out of that conversation and, really, when you’ve got 15/20 minutes, you’ve got to get the most out of that conversation so that you can leave with the steps to make sure that once you leave that appointment that you can really take care of yourself and you can do what’s best for you to really make the most of that treatment plan.
But that’s not something a lot of us do. Not a lot of us feel comfortable doing that. For the sake of, like, we don't want to be the disagreeable patient. We don't want to ask too much. We don't want to question too much. I think that section, that’s why we think that’s so important and then after that section there’s also pearls of wisdom from an expert.
So, we have this incredible lineup of over 111 women who are all medical experts (clinicians, and so on) who contributed to this. And so, for that section, you also get -- like, if they could sit down with you individually, and what would they tell you? That guidance is included in every chapter.
7:07
Amanda Testa: I think it’s so important to be sharing this information far and wide, too, which is why I love that you have this book because, so often, we are just taught -- well, I would say for myself, specifically someone who is a cis white woman who has been taught to kind of always default to someone else and not necessarily speak up. And so, I think there can be a lot of fear in speaking up for yourself, right? Especially in a position where you have less power than the doctor in some stations, right?
Mary O’Connor: Yes, and, Amanda, a few years ago, I had a medical student. We did a little study. So, there is an online software program that basically is focused on patient education and people can ask questions. Patients can interact with the program and ask questions, and so, I got permission from the company for us to do an analysis for patients that were having knee replacement surgery (‘cause I’m an orthopedic surgeon. I’ve done thousands of knee replacements in my career) as to the number of and kinds of questions that women asked in this program versus men.
8:13
This probably isn't a big surprise, but women asked more questions, and women asked a lot more questions in the topic areas that were more difficult for the physician to answer specifically. For example, women would ask a lot about pain. “How much pain, Dr. O’Connor, do you think I’m gonna have to have after this knee replacement surgery, and how long will I have the pain?”
My response is, “I can’t answer that, actually. Everybody’s different. Know that we’re gonna do all that we can to manage your pain because we need to manage your pain so you can do your physical therapy so you can have a great result from the surgery, right?” But the kinds of questions that women would ask are often questions that are much harder for the clinician to answer in a very specific way.
9:04
So, not only do women ask for questions which, then, takes more time on the part of the physician to answer, right -- I mean, I’ve experienced this as a patient. There’s that kind of subtle feeling like, “Okay, I’ve used up my question-asking time now, and I should stop asking more questions because…” You just kind of get this sense like that’s it, and that is something that we need to empower women to say, “I have more questions. I mean, if you don't have time right now, we can schedule a follow-up call or another appointment or a video visit or whatever because I need my questions answered.”
Amanda Testa: I think that’s something that is a fair thing to ask, right? If you feel like you're not getting enough time with your provider. Could you make another appointment where you could just have time to just talk and ask questions if they're something they’re available for, right?
10:02
Mary O’Connor: Absolutely. It is the hardest, as a healthcare practitioner -- the biggest challenge on the provider’s side is really having the time to spend with patients like you want to. But, at the same time, different patients need different amounts of time, and so, we still need to be able to meet the needs of the patient and answer their questions because otherwise they can’t make the right decision about what’s best for them and we really should be incorporating more shared decision making in terms of our clinical processes. The point about shared decision making is that’s the concept where, in that conversation, the patient’s values and preferences are identified and recognized and brought into that decision-making process, and a lot of times that doesn't happen. In fact, I would say the majority of the time, that doesn't happen.
10:58
Amanda Testa: You know, another thing, too, that I kinda want to loop back to which I think is important to note is that, for many people, learning more about our health and wellness is not something we’re ever taught, right? If we’re lucky, maybe we got a class or two in high school about it, and, really, that’s about it, and it was probably very basic, right?
And so, I’m curious what you might have to share around just what women can do in general or what people can do in general to kind of take more of an onus of learning about their health and how to empower, for themselves, even before there’s a problem ‘cause I think that a lot of the issues is that our medicine is really based, a lot of time, if there’s a problem and how to fix it. So, yeah.
Kanwal Haq: And I think what that -- in terms of how we laid this out, because that was really one of the things because I’ve seen -- you know, it’s like as I’m aging or going through different changes, I don't really know what to expect. Like, I don't know -- I would hear my friends say, “Oh, I turned 30, and my back started hurting overnight,” right? I thought that was a joke, but it turned out it really wasn't in some ways, but what do I do about that and how can I take better care of myself, and when I’m in my fifties, when I’m in my sixties, what are other challenges I may face?
12:13
And so, kind of with that, we made a list of what are the conditions that are impacting women right now, right? What are those top things? If you look at what are the top ten things killing women in the US, when we talk about women’s health, we’re not talking about those things. We’re not talking about heart disease. We’re not talking about dementia. We’re not talking about diabetes. When we talk about women’s health, we tend to talk about pregnancy and more reproductive health-related issues. While those are very, very important, limiting our education only to those pieces is really detrimental to our health because there are so many other pieces that play a role.
So, we kind of outlined 55 different clinical conditions that might impact you during your lifespan at different points, but in terms of being proactive about your health, we really wanted to incorporate that, and I think someone had a great suggestion in terms of how to use this book.
13:12
Read the first section. They're short chapters. Read the first section like it’s more about what is the landscape of women’s health, how to access care, things like that. Then, read the last section which is called “Taking Care of You.” So, it includes things on nutrition, sleep, exercise, all the things that we quote, unquote learn. “You’re supposed to eat right. You’re supposed to exercise,” but what does that even mean? If you have a certain condition, how can that play a role?
And so, in those chapters, we really try to break it down. Go to sleep at the same time every day, make sure it’s at a cool temperature, and all of these things that we don't tend to just know and we have to learn, but when are we taught that? We’re not, and so, we hope that this book will help us build those strategies, build those good habits in taking care of our self.
14:00
Mary O’Connor: I’ll add that, Amanda, in the common clinical conditions, the templates are very structured, so each chapter is basically templated the same. And so, it is what is the clinical condition? Can it be prevented? How is it treated? Why does it matter to women where we pull in data and research that’s available on disparities for women and women of color if there’s also information available regarding that. Then, questions to ask your healthcare team about the condition and pearls of wisdom.
And so, for example, if you're in seeing your doctor or your nurse practitioner, there’s only so much time, and if they’re spending that time basically educating you on the basics of, for example, why are urinary tract infections more common in women than men? Okay? Whereas what that woman really needs to know is, “Am I at risk of recurrent urinary tract infections,” right? “What happens if I don't get better with this treatment that you're prescribing?” So, there’s time that’s being spent, that precious time in that clinical encounter, that’s being spent on the basic education that that women could get from reading this chapter so that, then, when she’s there with her clinician, she can ask the more important questions for her.
15:17
Amanda Testa: I’m wondering, too, because this is a question. Say you have a loved one who you are trying to encourage to advocate for their health, and maybe they're resistant to that. And so, I’m curious what, maybe, you could offer in that area? So, obviously giving them the book, but what about people that are kind of more resistant to that? What would you say to that?
Mary O’Connor: Well, I’ll comment on this because I can’t tell you how many times I’ve heard in my career someone come in and say, “I had my surgery with this surgeon because I heard that --,” almost always he, okay, “-- he was a great technical surgeon and his bedside manner was terrible, but I didn't care about that.” If there is one thing I could do, it would be to tell people do not have surgery with a surgeon that doesn't listen to you and that you can't talk to because if you have a problem afterwards, you are going to be extremely dissatisfied and you may not have a successful resolution because there’s not good communication between you and this surgeon.
16:24
So, this concept that surgeons can be different and they don't have to be good communicators and connect with patients and have patients trust them because the patient is selecting this surgeon based on their, quote, “technical expertise reputation” I think is very dangerous, very dangerous, and people should seek clinicians that they're comfortable with because so much of the diagnosis in medicine is based on the patient’s history which means that there has to be listening, communication, and trust.
17:00
Amanda Testa: Listening, communication, and trust. I think that is really powerful, and finding the connection, the ability to communicate your needs.
Mary O’Connor: Right, I mean, if I don't feel like my doctor has my best interest at heart, why would I share information that I might be hesitant to share otherwise?
Amanda Testa: Right, that is very important. I think, too, it’s kind of trusting your gut in a way. When you are with a provider, do you feel like you can openly share, and if not, what might you need to be able to do that, and is it just something that you need to kind of tune in and say, “This is something I really need to share,” or is it that this person is not the right person for me, right?
Mary O’Connor: In my experience I’d say 85% of the time it’s not the right person and it’s not a good match.
Amanda Testa: Mm-hmm.
Mary O’Connor: And, you know, I’ve experienced that. A short story ‘cause stories are always good.
Amanda Testa: Yes!
Mary O’Connor: So, I had a patient come in and, unfortunately, I was always running late in clinic to see my patients, and it’s not because I was having tea and Bonbons, it’s just because I was spending the time that I needed to spend with the patients, and so, the best thing was to get the first appointment, right?
18:10
Because I wasn't behind at that point in the day, but, anyway, so the patient comes in, and she has been a secretary to a judge, and she’s upset that she’s waited 40 minutes, and do I not know that her time is valuable. I, of course, apologize, and I was very good at apologizing for this because, unfortunately, this was not an uncommon occurrence for me to be running late. So, I apologize, tell her how sorry I am, and then she says, “Well, is this always like it is for you?” And I said, “I’m gonna be honest, yes. I usually run behind because I'm spending the time that I think I need to spend, that my patients think they need with me, and so, I work through lunch, I work late, I don't do my dictations ‘til the end.” I mean, this is how I work. I said, “If that is really a concern for you, then I’m not the right doctor for you. I’m really not because it’s really gonna bother you that I am not on time for your appointment, so I would respectfully suggest that you seen one of my partners because he’s almost always on time, and then you’ll be happy with that, and you're not gonna be happy with me,” and I said, “And we won't charge you for this visit. This will be like we had this little chat, and I’m gonna refer you to my other doctor,” and she says, “Well, why can he be on time and you can't?” I said, “Because I spend more time with my patients. Period.”
19:34
Now, he’s a great surgeon. I think he’s an excellent doctor. I’ve sent my family members to him, but he has -- his style is different than mine. He just doesn't spend the same amount of time with patients as I do.
So, that was an example where, you know what? We didn't click. That patient and I would have been a disaster. We would have never had a positive, trusting relationship because every time I would be late, she would be resentful of it. So, that was a good outcome. Let me send you to my partner who is always on time.
Amanda Testa: I love the honesty. Go ahead, sorry.
20:11
Kanwal Haq: I can share a story as a patient of going into see my rheumatologist, and I had already been waiting probably 20/30 minutes in the room, and so, at that point, I’m thinking, “All right, it’s getting to be a bit,” and then I heard her outside, and I heard her talking to the staff, and the way that she was communicating, I immediately was like, oh, she’s a very gentle person. She’s taking a lot of time. She’s thinking through things. For me, the time wasn't an issue ‘cause I was really looking for someone who was gonna spend that time 'cause I was having these kind of complicated issues that need time, that we have to think through. It’s not gonna be a quick, easy fix. And so, I think, also, kind of understanding what you're gonna get.
21:05
We have a chapter that’s called “Finding The Right Clinician For You.” And so, it’s like what are the things I’m really looking for? And so, there's always gonna be some -- it’s never gonna be a perfect, absolute, what-I-dream-of situation, but, overwhelmingly, what am I looking for? For me, that was so rare because I couldn't find someone who was willing to take that time and really listen and be like, “Okay, here are some groups and here are some other physicians that I need you to see, and I’m gonna work with them as a team.”
I think it depends, from person to person, what we need. Is it Telehealth? Can I make a Telehealth appointment? Can I contact this person on MyChart if I have questions later? Can I have access? There are a lot of different things, and so, we kind of talk through some of those things like what are you looking for -- distance, time, type of visit -- so, really making that choice for yourself.
Amanda Testa: And I know there are so many good nuggets within the book, and I’m also curious just, overall, if there were one or two things that you wish every woman could know -- obviously, there’s a lot, but if you could just say, “Okay, here’s the number one thing or the one and two things that I really want you to know,” what would that be? What would that advice be for them?
22:20
Mary O’Connor: Well, Amanda, that’s a tough question because there are so many things.
Amanda Testa: Yes.
Mary O’Connor: But, again, I would say (which relates to my prior comments) I think it’s really important that you find the healthcare team that you’re comfortable with, that you trust, that will listen to you. The second thing would be to recognize that we have a lot more power over our own health than what we might believe because it’s actually our individual behavior that is the strongest factor in determining our health. And so, recognizing our responsibility to step up and take better care of ourselves and to prioritize ourselves as opposed to what we typically do which is I’ve got my husband, I have children, I have my older mother that I basically provide a lot of care for, etcetera. So, I am the lowest one of that ranking, and that, we can't do because we just end up hurting ourselves and then we can’t be helping others.
23:23
So, it’s really giving ourselves permission to say, “Nope, I have to come first right now,” and I know that’s not always the case where different priorities come in, but it’s changing our mindset to, “Nope, I have to take care of myself. I value, I matter, and I can't be of help to those that I love when I’m sick.”
Kanwal Haq: Absolutely, and I think, just like you said, like they tell you on the airplane, “You’ve got to put your mask on before you help anyone else put their mask on,” and, as women, we tend to not do this. We tend to kind of be taking care of everybody else around us, but to do that to the best of our ability, we have to take care of ourselves first. And I think that piece of you need to advocate for yourself, you need to be your own advocate, and that this is really important because, at the end of the day, like you, this is the body that you were given.
24:17
This is the body that you’re gonna live your life through, and so, you’ve got to take care of it, and you’re gonna know how you're feeling more than anybody else. So, you're gonna be able to communicate that, and you have to communicate with your team to get the care that you need.
Mary O’Connor: You know, I’ll just comment because every time I’m on a plane and I hear that announcement, I’m struck with, “I wouldn't do that!” I mean, if my child was sitting next to me, I would make sure their oxygen mask was on first. I mean, that’s honestly what I would do, and I appreciate the message, but it just shows how, as mothers, in particular, we put our children ahead of us which I would, again, still do that, right?
25:00
But, at least, if I have a little more recognition about how important it is that I also have to be taking care of me and understanding that I have needs and I need to be empowered to, for example, tell my husband that I need him to go do this, “Yes, I could do it, but, honey, you can do it too, and I need you to go do this.” That we just need to be more, I say, protective of our needs and not be doing everything for everyone all the time.
Amanda Testa: Yes, to that! I talk about that a lot on the podcast because when it comes to finding your feminine fire, so to speak, or just putting yourself first, I see that happen so much with, a lot of times, caregivers, mothers, because of that, our cultural conditioning that we are to just take care of everyone else and kind of martyr ourselves in a way which, in the end, does not help anyone.
26:01
I had someone on the podcast once, and they were talking about just the big instances of middle-aged women who have neglected themselves and just how the health issues start to pile on, you know? Also, cancer and a lot of things because they have neglected to care for themselves and, like you say, it’s not always easy but it’s finding the little ways that you can do it because, like you said, if you're sick, you can't help anyone. And, even a lot of times, with busy caregivers that have not a lot of resource or support, then they don't really get to take care of themselves as easily.
So, I think that is a real challenge.
Mary O’Connor: I’ll share another example. So, a friend of ours is basically caring for both her parents at the moment, and it’s a huge burden, and her father has dementia, and the mother broke her hip a couple months ago. She has siblings, but the siblings don't live close by, and she is just basically sucking it up and doing all this work, and I have said repeatedly, “What about your siblings?” to which the response is, “Well, they don't want to come. They don't want to help.”
27:10
I said, “No, no, no! That’s not the message! The message is you call them up, and you say, ‘You need to come here for a week. I need a break.’ Okay? This is not a request on your part. This is an expectation. ‘These are our parents. I’m here doing 100% of the load right now. My health is suffering, okay? And I need support. I’m not asking you to come and do all of it. It’s not an ask.’ Get out there and set this expectation, otherwise, guess what? they're not gonna do it. They're just gonna let you do it all, and that’s what you're doing right now, and look at what it’s doing to you! You’re not sleeping. You're losing weight. You have no time for exercise. I see the physical and mental toll on you, and you are afraid to demand of them that they come and help.” But she won't do it. See, this is how this psychology affects us and hurts us.
28:13
Amanda Testa: I can share a personal experience around there where I feel like I kind of learned this at an early age because, in my twenties, my dad had early onset Alzheimer’s. My mom was his main caregiver, and then she got breast cancer, and so, I just remember coming home -- I would come home a lot. Since I was in Colorado and they were in Georgia, I would go back a lot to help, and I just remember once when my mom was having surgery and I was taking care of my mom and taking care of my dad, and I was in my twenties, and I was like this is intense. And you’ve got to take care of yourself.
Then, I started doing a lot of research on caregiving and how to nourish yourself as a caregiver, and there’s actually a lot of good resources out there and groups and places where you can get support. So, I think that’s just important to note, too, that if you are a caregiver feeling overwhelmed, just reach out. You can DM us. I’ll share everybody’s information. I can share resources, but you can find those in your community too, because I think that is one of the things that I really feel is so key is just kind of getting more back to community support, community care, and really helping each other.
29:16
Mary O’Connor: So, Amanda, I’ve been in the health equity space for quite a while, and I chair a national group that is now a nonprofit called Movement Is Life, and we created a community-based program called Operation Change, and we have focused this on middle-age and older women with knee pain and some other comorbidity like obesity, diabetes. So, these are not healthy women, and they're all overweight or obese, and they have knee pain.
So, it’s an 18-week program. It’s three hours a week. The first hour is in some type of educational session where we talk about nutrition or depression or what arthritis is, things like that, and then there’s an hour of movement, different things. It could be some form of yoga or any kind of movement activity, and the third hour we break them into smaller groups for motivational interviewing where they can really explore what are the barriers in their personal lives to making healthy behavior change.
30:16
Okay, this program has been amazing, and we’re talking they don't see doctors, nurses. They're not getting any drugs or injections. Eighteen percent improvement in their walking speed over those 18 weeks. A 69% improvement in their sense of hopelessness because they're all depressed. These women are lower socio-economic status. They have knee pain. They're overweight. They’ve got a lot of stuff going on, but what I learned from them was the reason why the program worked. It wasn't that our education was better (‘cause they could get education in a lot of places), and it wasn't necessarily the movement or even the motivational interviewing which I thought it would be. It was that we created a community. We brought them together, they formed a community, and they provided each other with the emotional support to make the behavior change.
31:10
That was, like, a lightbulb moment for me for which I actually did a TEDx Talk because the lightbulb moment for me was we can all be health promoters. Each of us in our own space, our own sphere, can help promote healthier behaviors in others. I can bring fresh fruit and vegetables in for a snack at work. I can say, “Hey, instead of having this meeting face-to-face, let’s go for a walk and meet while we’re walking,” right? I mean, Kanwal and I writing this book is us being health promoters to other women. And so, it’s recognizing that each of us has this power to help promote health and the power of that community to provide you the support that you need to make the change because changing behavior is really hard.
32:05
The hardest thing, probably that we do. We have a chapter on that that talks about that in the book. But it’s really the emotional support that we need from others to help us make the behavior change that’s key.
Amanda Testa: Ah, I love that. That’s so important.
Kanwal Haq: And I think even with Mary and I working together over this, sometimes we’d have our weekly meetings and then Mary’s like, “Oh, I was on the elliptical,” or as we were talking to other women, and I’ve noticed two things in myself over the writing process. One, I’ve become a better advocate for myself in terms of working with my clinicians, asking for the things that I need, and, two, I’m building healthier habits because I feel like now I have this community of women who are really supporting this method.
33:01
We really wanted to support each other to get that care, and even though we didn't set out to create this community, it naturally happened, and I've just seen, oh, wow, three years ago, I was not working out three to four times a week. Now, I am! I am eating healthier. I’m a lot more cognizant just by talking about this a lot more and writing about it. I think the power of that is just incredible because it’s like what we were talking about earlier. We have a really hard time putting ourselves first. We put everyone else in front of us, but having this community of women who are like, “No, you’ve gotta do that,” we all kind of encourage each other to do that, to take care, to rest when we need to, and that, I don't really know how to put it into words, but this works because I’ve seen it, just in the process of writing this book, on my own health.
34:01
So, I hope that this is going to create more communities in our local community, in our work community, in our friends, and get that conversation started. And so, that we are having these conversations and we end the book with what Mary said, that we all can be a health promoter and kind of changing that shift from being a patient to being an agent of change, and really we have the power to do that, and it’s incredible. It takes some time to see it, but once you see it come to life, you're like, “Oh, wow! I don't even know how I progressed this much.” It’s really incredible.
Mary O’Connor: Amanda, you know, there’s one other thing that surprised me when we were writing the book, and that is how common it is for there to be sex differences in clinical conditions. Now, I’d known this in the orthopedic space because I’ve researched this, and this has been my clinical area, but it is so amazing that across so many different clinical conditions, women present with symptoms that are different than men or they may respond to treatment differently, and so, I really enjoyed learning about that as Kanwal and I were reading the chapters that the expert contributors would send into us.
35:25
So, that’s another thing that we tend to forget. Every cell has a sex. Every person has a gender. And so, there’s a lot of physiology and medical illness that is driven by sex or influenced by sex, is a better phrase. If your healthcare team is not paying attention to that or knowledgeable regarding that, then that could be to your detriment, and heart disease is the easiest example for that. Women present with different symptoms than men. Why?
36:01
Because they actually have heart disease that’s different than men. Women tend to have heart disease that involves the smaller vessels in the heart. Men tend to have disease that involves the larger vessels. And this makes all the difference in terms of how that woman presents with symptoms and if the doctor isn't thinking about that, that woman is being sent home from the emergency department with diagnoses of indigestion as opposed to, “Oh, my. Maybe she’s actually having a heart attack.”
Amanda Testa: And I've heard that. ‘Cause you hear when you are -- some of the things to look out for, right, if you feel like you're having a heart attack and how it can present differently for women and men, and I’m wondering, too, what else is there to look out for with those discrepancies, would you say?
Mary O’Connor: Well, what I would say to women is if you’re going in and you think you're having chest pain or tightness, right -- because women will not necessarily feel pain. It’s a tightness like there’s something that’s not right. So when you're going in to be evaluated, ask the question, “How do you know this isn't my heart? Women have heart disease that’s different than men. I need you to test me and evaluate me and then reassure me that it’s not my heart if, in fact, it’s not my heart,” right?
37:23
Because, otherwise, our symptoms can just basically be poo-pooed.
Amanda Testa: I think, as you say that, too, it’s also really listening to yourself, and if something’s not right, keep asking the questions until you get the answer that satisfies you, and if not, find someone who will give you the answer, right?
Mary O’Connor: Absolutely because I don't know how many times -- we’re conditioned at a certain point to, then, say, “Well, it’s in my head.” I mean, we don't condition men to say, “Oh, your symptoms are in your head,” but we condition women to say, “That’s in your head. That’s not real.” That’s just craziness, but that is our culture, and the medical profession -- again, my opinion, stereotyping, but I believe it’s all true, and I’m sure I could find data to support this -- we are far more likely to say that the symptoms of an individual are in their head if that person is a woman as opposed to if that person is a man.
38:22
Amanda Testa: It’s so important to advocate for yourself. This is why this book is such a great tool, so if you can learn -- and here are the questions you need to be asking, here’s what you need to be advocating for. This is kind of a jokey story, but it’s so true. It’s like if you can kind of speak the language of the world that you're in, it does help.
So, for example, a couple of years ago, our air conditioner broke, and my husband had a friend who does stuff in that field, and he was like, “It sounds like it might be this. Ask them if it’s this,” and it’s a word that you wouldn't normally know, especially as a woman, I’m saying, “I think it might be this.”
39:00
He was like, “Oh,” you know? He got it, and it was much more of a supportive environment versus me not knowing the right words or knowing what to say, right? It could be easier to be taken advantage of or -- I shouldn't say taken advantage of -- or just miscommunicated. There’s more of a route for miscommunication, right?
Mary O’Connor: Absolutely.
Amanda Testa: And I know in the book you do share about that. Yeah, go ahead, Kanwal.
Kanwal Haq: Yeah, we just tried to address that because in kind of finding the balance of sometimes it can just be medical jargon and they're spitting all this terminology at you, and you're like, “What does this mean? I don't have time to pull out a dictionary and look up all of these words.” But, at the same time, if you have a meniscus tear and you want to know what kind of tear it is, we kind of put it in layman’s terms and then we put the medical term in parenthesis so that you have both, right? Right there you could understand what does this mean. “Oh, a bucket tear. Here, it looks like a bucket. Here’s also illustrations that kind of help in the understanding of all of these things ‘cause sometimes we really need that visual representation, and it can stick with us a lot longer, too.
40:08
So, you digest this information in multiple ways, and hopefully it will stay with you by the time you get to the doctor’s office and afterwards.
Amanda Testa: Well, I just really want to thank you both so much, and I want to just have everyone who’s out there to make sure to get a couple copies of this and share it with their loved ones because it is so helpful just to have this handbook. You're like, “Oh, okay!” It is so well organized where you can easily search through and be like, “Okay, this seems to be what I’m feeling. It’s my knee. Let’s look up and see what’s going on there.” So, I think that’s such an easy way for every person out there that maybe doesn't have a lot of medical knowledge to get better care and get better support, yeah.
Mary O’Connor: This book can actually be used by men and women, right?
Amanda Testa: Yeah.
Mary O’Connor: Although, we specifically focused some of the sections of the chapters on women to say how does it differ for women, right, compared to men. But this book is a very useful tool for anyone with any kind of medical condition, aside from, as Kanwal said earlier, we avoided pregnancy-related chapters because there are already plenty of excellent books out there related to fertility and pregnancy, but anybody would benefit from this book. Although, again, we specifically wrote it to empower women.
41:31
Amanda Testa: Yeah, I think it would be great if, just for all genders and expressions to understand more about all the bodies because it’s just very helpful because, at many times in our lives, we probably have people we love that have bodies different than ours, and to be able to support those people and understand what’s going on, that can be very supportive. I watched a funny thing today. It was a reel on asking men on the street questions about women’s bodies, and just the answers and the lack of education is really distressing to me. It’s distressing that we don’t know the basic things about anatomy or well-educated people don't know a lot even, right? So, this is why this work is so needed, and I am so grateful for you for doing this. So, thank you!
42:14
Mary O’Connor: Our pleasure.
Amanda Testa: I’m wondering, too, if there are any last words you want to share or if there was a question that you really wished that I would have asked that I didn't or maybe a point you really want to make sure to cover?
Kanwal Haq: I think I just really want to hear feedback, and I want to hear from the women what they like about this book, what they want to be included in the next edition because I’ve been already getting some feedback, and I really, really welcome more feedback of, hey, what was useful? I think it was really awesome -- I heard a story of a women the other day who told me she’d bought the book, and she said, “I’ve been dealing with migraines for years, and so, actually, I read the first couple chapters and then I read the migraine chapter, and I’ve been on this medication for a long time that I really didn't like, but I never even knew that I could ask my doctor to be on a different medication.” She said, “After I read this book, I did ask! I was like, ‘Can we try something else?’ and he said, ‘Yeah,’” and she did, and she was like, I’m doing so much better.”
43:13
But I think just that lightbulb going off and, like, I don't have to deal with this, I don't have to just take it. I can get better care. And I was like, “Well, how do you feel?” She was like, “I feel great!” and then she was like, “I didn't know I could do that!” I was so proud of her, and it was also this is a woman who’s always advocating for other women. She takes care of so many women in our community, and so, for me, I was so happy that she was taking the time to take care of herself. I hope this book does that for our sisters, for our moms, for our grandmothers, for all the women in our lives because we want to see them thrive.
Amanda Testa: Yes.
Mary O’Connor: I would just add that I agree completely with my incredible co-author, Kanwal, that we would love feedback from the people that use the book.
44:04
Maybe there will be a second edition down the road at some point, and so, getting some feedback from people about what they liked or what they would like to see more of or less of would be very helpful because the whole purpose of this book is to help individuals (women, in particular) be better advocates for their own health.
Kanwal Haq: The last thing is we really hope right now you buy this book, and I hope it helps you today. I mean, I hope it helps you later down the line, you can pull it off the shelf. But, also, the proceeds of this book are invested into education and research at Mayo Clinic, so we hope that’s gonna further better care for women.
Mary O’Connor: Absolutely.
Amanda Testa: And, if you wouldn’t mind sharing (I’ll let each of you go), where is the best place the listeners can connect with you and learn more about you and get the book? I’ll also share all this in the show notes, but I want to share it here as well.
Kanwal Haq: Sure, so, our website is www.takingcareofyoubook.com, and there, we’ve got links to Amazon, Barnes and Noble, Target, a couple of other retail sellers. You can also ask your local library to order the book, and your local bookstore, if you don't see it on the shelf, you can ask them. They’ll order it for you, but it is available on multiple different platforms so you can pick the one that you like best. We’ve got a Kindle version. We’ve got an audiobook version. So, based on how you learn best, as well, you can pick.
45:25
Mary O’Connor: And we have our email addresses right there in the book so people can reach out to us and connect with us. Again, we’re happy to hear feedback, and I ‘m just constantly amazed at some of the really basic questions that I get from just my family and friends that will reach out to me with medical questions, and those that are non-orthopedic related, right, because they just don't know what to ask. And so, hopefully, this book will give them the knowledge of basic questions and fundamental things that they should understand, and then, as they have questions, ask.
46:03
Amanda Testa: Well, thank you both so much for being here and for all of this work that you're doing, and also, too, for the listeners, I would love for you to just maybe take a minute and digest. What is one of the main nuggets that you’ve received from this episode? Please, shoot me a DM @abtesta or reach out to Dr. O’Connor or Kanwal, and we will answer your questions because, obviously, they are excited for you to get the book and give your feedback, and also know that no question is too small or silly, and feedback is always important and encouraged. So, thank you all for listening, and thank you so much again to Mary and Kanwal for being here, and we will see you all next week!
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Thank you so much for listening to the Find Your Feminine Fire podcast. This is your host, Amanda Testa, and if you have felt a calling while listening to this podcast to take this work to a deeper level, this is your golden invitation.
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