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Women often hide their pain or chronic illnesses for a variety of reasons. Why is prioritizing our health the least of our concerns? Why do we hesitate to take care of ourselves? Let’s explore how women manage and mismanage their health through discussing different aspects that affect women’s decisions in seeing the doctor. Our guest, Susan Salenger, shares in-depth insights in examining ways women neglect their own health. Why do we put our needs on hold for everyone else? Tune in to know how to be aware of the decisions we make that could impact a lot of things in our lives.About Susan Salenger
Susan Salenger is the author and researcher behind Sidelined, How Women Manage & Mismanage Their Health. Sidelined examines the many ways in which some women manage and sometimes mismanage their healthcare. (Release date, April, 2022) Susan explores how women, typically the medical gatekeepers for their families, tend to be extremely conscientious about taking care of themselves, yet at the same time inadvertently undermine their own care. They often hesitate to call the doctor when they don’t feel well and worry that their doctor visit will take time away from their families or work. They may hesitate to ask doctors the necessary questions and don’t always comply with the doctor’s instructions. Salenger’s research reveals how conflicted many women are about the medical decisions they ultimately make. Website Links: https://www.susansalenger.com/ https://www.linkedin.com/in/susan-salenger-a4a02716/ https://www.instagram.com/susansalenger/ https://www.facebook.com/suesalenger/ https://twitter.com/susansalenger---
Show Notes: (RAW audio) 1:30 Susan Salenger’s Background Story 03:60 Basic Reasons Women Feel Ashamed Of Their Health 26:60 Depression 27:55 A Deeper Understanding Of Susan’s Journey 36:60 Women’s Medications 47:38 Awareness 48:41 Action Points---
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Sidelined: How Women Manage & Mismanage Their Health With Susan Salenger
In this episode, we're going to explore how women, typically the medical gatekeepers for their families, inadvertently undermine their own care. They hesitate to call the doctor when they don't feel well and they worry that their doctor visit will take time away from their families or work. They may hesitate to ask doctors unnecessary questions and often don't make the most complaint of patients. To unpack this issue, I'm joined by Susan Salenger. She is the author and researcher behind Sidelined: How Women Manage & Mismanage Their Health. It will be released in April of 2022. I have my pre-press copy here that I've had the pleasure of spending about a week with. Susan, without further ado, welcome to the show. Thank you for that lovely introduction. I appreciate it. I understand this journey a little bit from a personal level because I am a woman. I have two boys and a husband and I tend to manage their health care. I'm the one that takes them to their doctor's appointments. I’m the one who reminds my husband when it's time for him to get a physical. I felt this book. I also understand your personal story when you didn't ask for a second opinion even when your gut told you that you should. That resonated with me. I’d love for you to start by telling us that story. Why did you choose to go under the knife even when you believed you did not need to?
Sidelined: How Women Manage & Mismanage Their HealthStress
There are a couple of reasons. One of the basic reasons is I discovered how many women feel so ashamed of being ill. Many women seem to attribute their illness, whatever it is, to stress. They see their stress as a public manifestation of their inability to manage their lives. They're embarrassed so they hesitate to get a second opinion. They don't want anybody to know that they're ill. That's one reason.Doctor’s Feelings
The other reason is we were taught to play nice and make friends. We don't want to hurt the doctor's feelings. We don’t want to be rude so we don't do it. It's a major mistake. What a lot of us don't realize, I certainly didn't until I did the research, is how tricky an accurate diagnosis can be. That has nothing to do with the competence of the doctor. It's just that there are maybe 20,000 to 30,000 different diseases out there. Many of whose symptoms mimic one another. For the doctor, it's like looking for a needle in a haystack. They have to respond and figure out what is the actual symptom that they should be treating, which is potentially a noise to the main issue. As we continue to live our lives, especially when we're eating a bunch of processed foods and junk food, that isn't health-supportive. That's one of the things that women might be ashamed of when they're going to the doctor's office. They don't want to tell them, “I ate half of my kid’s sandwich. It was peanut butter and jelly. I had a bag of chips as opposed to making something wholesome. I drank a little bit too much wine consistently and I'm starting to see weight gain from that. That's impacting my health in these ways.” I don't want to tell my doctor because this is something I covet in a way, having mommy time, socializing with friends after the kids are in bed or maybe having an unhealthy habit. We don't necessarily want to share that in this transparent way because it's hard to admit that your life isn't perfect.For women, it’s hard to admit that their lives aren’t perfect. So they neglect their own health and refuse to see the doctor.
Resources
Another reason for a second opinion is that we have to get there. We may not have the resources, either financial or transportation. We may not have child care. It's not just a question of picking up the phone, making an appointment and going over. It depends on who you are, where you are, and what your circumstances are. I'll give you a clear example from my own life. I made appointments for all my kids. I have my appointment for an OB-GYN where I'm supposed to get screened because they do a pap every three years now, and I completely missed the appointment. I got a notice in the mail like, “You missed this important screening. You should go in and do this.” The fact that I had to be prodded in that way felt like I was getting a past due notice from some bill I didn't pay. I wish I could say you we're atypical but I don't think you are, unfortunately.
Women’s Health: Women see their stress as a public manifestation of their inability to manage their lives. They're embarrassed. They don't want anybody to know that they're ill.It's so important to take care of ourselves.A couple of the things that you mentioned in your book have to do with certain diagnoses like if somebody has fibromyalgia. Often the doctor might even make them feel that way like, “Perhaps this issue is psychological. You need to seek some other support.” How would you advise somebody to navigate that situation when they have some diagnosis that’s a little bit more difficult to pin down? That is tricky because it can take almost 5 years, sometimes 7 years, for people with chronic diseases, whether it's fibromyalgia or whatever to get a diagnosis. There have been several books about how different women have gone from travel from doctor to doctor. All I can say is you have to stand your ground. You're under stress because you're in pain, but if you know that the pain is causing you stress, you have to get a second opinion, a third opinion, and keep going until you finally find the most accurate diagnosis. A big part of the thing that might be holding people back has to do with finances. In some cases, you're paying a copay. Depending on your insurance, that copay might be quite large or you might have a minimum expense that you have to reach to get to that space. What recourse do individuals have if they're struggling in that way? I don’t know. It depends on your insurance. Some people don't have the transportation or the time to go to all those appointments that I described. I can understand that but if you're not satisfied with your original diagnosis, if it doesn't feel right or comfortable, don't do what I did. Listen to your gut. Do as I say, not as I do. I appreciate the I don't know because there are a lot of questions I have that I don't know the answer to either and I continue to seek. I’ll give you another example. In my case, I had a couple of spots appear on my temples. They could be age spots or keratosis of some sort, call them what you will. I'm forgetting what the actual technical term is. I saw them erupt on my face after I had gone through a slight medication change. I thought it could have been related to that because often my asthma or discoloration of the skin can be a result of several different things. It can be hormonal. I'm pre-menopausal somewhere in there because of my age. I'm in the middle of that zone where it could be so many different things. I immediately made an appointment. I went to the doctor. The way they were running things because we're in the midst of COVID is a little strange. I saw some techs that were all gloved up with a mask, shield and everything. They took high-tech photos of my face using an iPhone of all things with some attachment on it to magnify the two spots. They send it over to dermatology and I had a diagnosis of non-specific keratosis or something like that. They gave me a cream that I would have to apply to my face for a couple of weeks and essentially say, “After that, if they don't disappear, then we'll check in with you again.” Nobody called me back. I had to sit there and hound like, “I'm done with the diagnosis.” It wasn't until I took my kid in for a doctor's appointment and mentioned to my doctor in person, “Nobody's getting back to me. This is what happened. I did finish the cream but the spots aren't gone so I probably need to follow up there.” With the way our systems are, sometimes a person in that situation falls through the cracks too if they're not taking it seriously and taking the time to get back out there. In my case, I'm busy, I've got my two kids, I work and I have a show. There are a lot of balls that I'm juggling. I'm the person that you wrote this book for. I feel like there is a dramatic social impact to not putting our health first. If we think about every time you fly on a plane, you have to put your mask on first before you assist the person next to you. In full transparency, I haven't been putting my physical health first. I need to start making some changes to do that again. This is something I come back to probably numerous times over my life like, “Maybe I need to eat less of these carbohydrate and refined foods, get more to the whole foods again and adjust so that my health and energy level is at its best.” If I do have a precancerous lesion, I'm going to heal quickly after I get that treatment, as opposed to being in a spot where I'm going to struggle through the treatment and recovery. I need to set myself up for health and take that as a responsibility on my own.
Women’s Health: You have to look through the lens of this. Your diagnosis and treatment is truly a collaboration between you and your doctor and your doctor needs some backup.Using The Illness Against Them
What you're saying is important. I heard two things. The first is that there are some definite structural issues in our medical system that are making it a lot more difficult for women than it is for men. Although, we're all up against it. Particularly during COVID, there's no question. We also have to remember that self-care equals health care. If you don't take care of yourself, you do let your health go. You then can't take care of your family in the way that you want to. That's an important thing to remember. I also think that if you blame yourself and become your own victim, it makes it much more difficult to recover. If I don't get that screening and get these checked by a dermatologist, which I'm going to do, I could leave my kids without a parent if I don't take this seriously. That's the worst-case scenario, not to be a Cassandra about it. I'm smiling because I have a spot on my face that hasn't gone away. I keep watching it and nothing changed. It doesn't grow or shrink. It does nothing. I am going to the dermatologist too. One of the things that I object to in a diagnosis is when they say, “Let's watch and wait.” Sometimes you want to be conservative and be more cautious than not, but I don't want to watch and wait to see what happens. I know this isn't right so I’ll just as soon have it removed unless they think I'm wrong. I don't want to tell the doctor what treatment I need. On the other hand, I don't necessarily want it to develop into something that's a full-blown serious disease. My husband had melanoma for a while at one couple of different points. I don't want that to happen. It's scary. In my case, that topical cream that they asked me to put on for a couple of weeks was a mild chemotherapeutic agent. It made me feel completely crummy for the period of putting it on for a couple of weeks and also the month that followed, and nothing changed. It’s either not what you were thinking it was and therefore, not treatable in that way or insufficient treatment. I didn't know another way. I'm thinking, “I'm going to follow my doctor's recommendations because I don't want to take a chance with this.” Now I'm going to get in front of an actual dermatologist as opposed to a tech taking a photo with an iPhone. I'm sorry but that seems like a little low-tech to me. “It’s just a tad,” and it can be a dangerous problem. My husband thought his foot was just dirty. He kept scrubbing it and he had the spot on it. We didn't see a tech. We did see a dermatologist and I would have been uncomfortable if we hadn't. I know what you’re saying. I have the same middle name as my grandmother. I lost her to melanoma when I was nine years old. It's like one of those things that I take pretty seriously. Another issue that we're touching on a little bit has to do with women's health care versus men's health care. The things that come up for me, particularly because I have a background in nutrition and I have done a lot in the space of heart health, is how heart disease is the number one killer of both men and women. We only talk about it with regard to men. Women don't necessarily know how to identify the signs of a heart attack or even the things that are leading up to a heart attack. If they're not getting screened regularly, if they are not taking their doctor’s perspective on those things and not getting blood work done, they don't necessarily know that there's a problem or what it would take to identify that particular health issue until it's too late. I wonder what your thoughts are specific to that. I'd like to talk about how we medicate men versus women. On heart attack, I'll tell you a study because it frightened me. There was a study done with a bunch of internists. There was a fictitious male patient and a fictitious female patient that the doctors were given a script. Both patients had the same cardiac symptoms and cardiac risks. When the first script had no mention of stress, whatsoever, both the man patient and the woman patient received equal treatments. They were all told to go for a cardiac workup. When the female patient’s script said that she was under stress and that script was evaluated, only 15% of the women were told to go for a cardiac workup.Women often don't have the same symptoms as men.The minute doctors see stress or women patients say they're under stress, it can skew the diagnosis. That's a very dangerous precedent. I have two daughters. Both of whom are older and I've told them from my research, “If you think you're having a heart attack and you're told it's stress or it's a stomach ache, insist on an EKG. You must get an electrocardiogram before you leave the hospital if you go to emergency.” That's very important. Even in 2022, as sophisticated medically as most of us are, heart attack symptoms are still misinterpreted in women. I don't know quite why that is because it's as common in women as it's not an unusual occurrence. Let's get back to the social impact of that. Often, women experience heart attacks to the point where they may be having miniature heart attacks for days on end. By the time they get to the doctor, they need something like a triple or quadruple bypass because they've so damaged their heart. They didn't even know it was happening. This happened specifically in my circle. I had a nanny. I worked from home because I was nursing. She would text me in the middle of my workday, “It’s time to feed the baby” type of thing. A text came through and that's what I expected. I picked it up and she said, “I'm not feeling well. Come upstairs as soon as you can.” I was in the middle of a meeting. I said, “I'm sorry. This never happens. I need to go.” I got off the call and went upstairs. She said, “I'm nauseous. I've had a headache off and on for a few days.” I said, “You never call in sick.” We can talk about that too. The fact that women often work when they are not feeling good. She never called in sick. She was always there and very reliable. She’s everything you would want in somebody that's going to be taking care of your children. She’s there to support you every day but to her detriment in this case. I looked at her and said, “We're going to the hospital. We're getting in the car.” She said, “What are we going to do with the baby? I don't want to bring her to the hospital where all these sick people are.” She’s putting my child first. I said, “We are getting in the car.” I get her in the car thinking, “Call her husband. He's going to be there.” This is the whole real story. I didn't want to put her, call 911, wait for a van to come, show up, pick her up and take her to the hospital. I was already identifying the signs of a heart attack. The fact that she said that she had been experiencing these symptoms off and on for a few days. I was like, “We're getting to the hospital.” She ended up having to vomit in the bucket that I brought in the car with us because she was so sick. We get to the ER and I'm like, “Somebody needs to see her. I'm fairly certain she's having a heart attack. Here are her symptoms. She says that she's been experiencing these symptoms for a couple of days. Get her in.” They looked at her and they were like, “We're getting her in.” They got her on an EKG. It turned out that she had been having a heart attack for probably as much as a week and had to end up getting triple, quadruple bypass and things like that. I can't remember exactly but it meant that she had to retire from being my nanny. We were able to ensure that she could go on and live a relatively healthy life for the next few years. It's possible. She might have been okay but if she'd waited much longer, probably not.
Women’s Health: Women experience heart attacks to the point where they may have been having miniature heart attacks for days on end. By the time that they get to the doctor, they need a triple or quadruple bypass because they've been so damaged.The more times you go to the doctor, the more medications you get for legitimate reasons. Women have more chronic diseases. And so we need more medication for relief.After I had my surgery, I thought to myself, “I can't be the only idiot in the room. There must have been other women that have made medical decisions that they too later regretted.” I found some women. I interviewed a bunch of them. All of them, at one time or another, had done more or less what I did. Not necessarily surgery but they have gone along with their doctor, even though it went against their better judgment. I thought, “I better do some research and see if this is typical or only the particular women I interviewed.” That can happen. I went, did a lot of research and subscribed to a lot of journals. There is a ton of literature that says, “Women don't take care of themselves. We put our families first and ourselves last.” It's very interesting. Shame is the primary reason that we do that besides taking care of our families. We're embarrassed. We think we can't manage our lives. Illness is random. We all forget that. The journals backed up what I extrapolated and learned from all the women that I interviewed. I want to talk for a moment about the fact that there's this common perception that there's karma out there even from a health perspective. You might have done something to deserve the health cards that you were dealt. I'd like to hear from your perspective what this means and why you say illness is random, specifically. I'm going to correct myself. I should have said illness can be random and often random. Certainly, if you drink too much and you end up with liver problems or you smoke a lot and you end up with lung cancer, that's not a shock. On the other hand, what I mean by random is there are a lot of people who smoke and don't get lung cancer. There are a lot of people that get lung cancer who had never smoked. It depends. I'll tell you about my father-in-law who lived a very healthy life until he died at about 84, 85. He ate nothing but red meat, smoked cigars for most of his life, never exercised, hated vegetables and wouldn't look at a carrot but lived to be a healthy 84, 85, whatever he was. On the other hand, I exercise 3 or 4 times a week. I have a very disciplined diet. My blood pressure is higher than his ever was. Sometimes it's the luck of the draws and genetics. You can't say, “I did this, therefore, if I don't do this again, I won't be sick.” We all want to find the reason that we're ill. It gives us a sense of control, but it's a false sense of control because we can't control it. An answer to the stress issue, there are a lot of women who are stressed and get sick. There are a lot of women who are stressed and don't get sick. There are a lot of women who aren't stressed or stressed less and get sick anyway. I don't know that you can say it was because of this or that. “If I had only napped more, I wouldn't have gotten sick,” that kind of thing. To speak to that, the science behind it is quite clear too. If you've taken a genetic test from 23andMe and taken some of their health screening questions, they'll reveal some of what your genes tell you about your health. For instance, I found out that I'm of a particular genotype that is associated with less fear of heights for some reason. I'm not afraid of heights at all. It’s interesting. It’s even attached to behavioral things. They've also identified that if you have the APOE4 genotype and more than one representation of it, you're going to be much more likely to develop cancers. Early on, when geneticists were unveiling all this incredible research, they were battling the ethics of sharing with people what their genotypes were, how the specific genome that you have impacts the likelihood of your health to remain constant, and also the fact that there could be an ethical quandary when it comes to insurance and medical insurance. This is a good reason why many people choose not to get their genetic tests done. They're fearful that eventually, it could be used against them. That the whole article was in the paper. What people don't want their insurance companies or themselves to know. If you know it and you share it with your medical care provider like, “I was looking on 23andMe and it turns out I have a higher likelihood of developing Alzheimer's and early onset. I want to talk to you about that.” Does that become part of your medical record? Is that going to somehow impact your health care long-term? What happens if we suddenly go to a space where this is considered almost a preexisting health condition because we are predisposed to have this certain trajectory about our health? It's a scary thing. That’s one of the structural issues that prevent people from finding out as much as they can about themselves because it can be used against them. That's a viable conclusion. It's a possibility because you never know what's going to change about the law. What's true doesn’t need to remain true in 10 or 20 years. Laws can change and so we'll see. Ultimately, having all of those tools in your tool shed is a very good thing because if you learn that you're predisposed to something, you can take your health into your own hands. You can say, “I need to make these life choices that are going to support my health long-term. I need to know that I'm going to have a higher likelihood of developing heart disease. I must get all my Omega-3s, maybe consider taking a CoQ10 supplement, and consider dietary and lifestyle changes that will support heart health.” These things might be best for us anyway but sometimes you need a catalyst, a little push or more knowledge.
Women’s Health: If you find yourself particularly depressed and you don't have a reason for it, that can be a symptom of a heart issue as well.Awareness is critical. If you're aware, you have some control to do something about it. You need to recognize and learn to deal with the hurdles that you're going to have to jump because of the systemic issues.We're prescribing medication for ourselves without perhaps the necessary pharmaceutical or chemical background to know what we're asking for. This advertising is very serious. Medications that are advertised sell nine times more than medications that aren't. It's very tempting for pharmaceutical companies to advertise a particular drug and they spend millions, if not billions doing it. Their advertising budgets increase annually. They have more money to spend because they're making more money. They keep ratcheting it up. I think of a couple of specific ads that I've heard in the past couple of years. I don't want to name a specific drug or drug company. I'm a little scared of getting sued for something and saying it wrong because I'm going from memory here. There was an ad that I saw where they were giving a drug for rheumatoid arthritis and saying in the end, “Side effects may include.” Among the list of side effects that it could include was leukemia, which is cancer. Let's think some of these things through a little bit more. Some of the drugs that you may be prescribed can create more problems than they solve. One of the most commonly prescribed drugs is a set of drugs to help you sleep. The reality is if you're not sleeping, there are typically other underlying reasons that you're not sleeping. That can be addressed through diet and lifestyle as opposed to taking a pill. The moment that we start to go over that edge and say, “I'm going to take this pill to sleep,” the quality of sleep may not be good. It's a drugged sleep. You wake up groggy. You may not feel as clear throughout your day because that's not the same quality of sleep. You're over caffeinating and suddenly, you're starting to feel anxious and you get another pill for anxiety. This is impacting your mental health and now you need another pill for your mental health or depression. There's a cascading set of events that occur from the first drug being prescribed, which you may not have needed in the first place if you'd made a few diet and lifestyle changes. I'm not trying to preach here but these things are common sense. We know them in our bones in many cases. It's tough for people to go against the doctor’s recommendation, “You're having trouble sleeping. Let me make a prescription for Sonata.” You say, “I'll do that.” You do that and you get a cascade of other effects from it that you could have eliminated by simply not taking that drug in the first place. I want to go back to what you said about the side effects of leukemia because that almost happened to me. I have an arthritic thumb and it hurts but I didn't know it was arthritis. I went to the doctor and she said, “It's arthritis.” She gave me this medication. Fortunately, because of all my research, I looked it up. I'm taking Lexapro for depression. One of the side effects of this particular drug is a brain bleed. Would you rather have a sore thumb or a brain bleed? It was an easy decision. The other thing I want to say too is each American takes an average of about four prescriptions every day. That's a lot. All of these drug ads that are advertised towards consumers are mostly aimed towards women. We make 80% of all healthcare purchasing decisions. If you notice your drug ads, the protagonist is frequently a woman with a child because we’re caretakers and they found that mothers or women respond to those ads even more. Pharmaceuticals are a business and you have to be careful about what you do. Research what you take. Imagine, I could have had a brain bleed because my right thumb has arthritis. Your doctor doesn't necessarily understand all of the conflicting side effects. They are not a pharmacist. Even a pharmacist isn't going to tell you that when they do the consult unless they are looking at the two side by side. When you're picking up your prescription for the first time, they’ll say, “Here’s the list of side effects. This is how you take this drug. This is when you don't have it with milk. If you experience X, Y or Z, you should contact your doctor.” Those are the basics, but they aren't going to know that you're on Lexapro or something else.
Women’s Health: There's a real compliance problem with people. Men and women don't necessarily do with their doctors suggest, but women are less likely to comply than men are. Because again, we're taking care of our family.