Susan Salenger protects women from being sidelined over health concerns

Susan Salenger was in business with her husband for many years where they produced and distributed management training films for companies.

Their videos explored topics like customer service, telephone etiquette and basic skills every business needed to develop with its staff.

When they sold their business, Susan’s retirement lasted all of three seconds.

“That did not work for me at all, so I went back to school to take some anthropology classes,” she explained. “I was always intrigued about biology, cultures and society in general.

“I learned a lot about medicine and diseases, as well as the perceptual bias and gender bias against women,” she added. “I decided there was an awful lot of great information out there, but women weren’t accessing it because people working in academia usually wrote material for each other.”

As a result of her research, Susan published her first book, “Sidelined: How Women Can Navigate a Broken Healthcare System.”

“When I was in school, I was surprised to learn women’s symptoms are misdiagnosed 30 percent more than men when they visit a doctor,” said Susan. “Their symptoms are dismissed more often than men and I was, frankly, appalled that women often wait longer to receive pain medication or to have surgeries scheduled.

“More than 12 million people die every year from medical misdiagnosis, and a significant number of them are women,” she added.

Autoimmunity problems

Susan explained it is generally more difficult to diagnose women’s health issues because they suffer from a lot of autoimmune diseases.

“Out of all the autoimmune diseases we’re aware of, women account for nearly 90% of patients,” Susan explained. “Their problems often can’t be diagnosed through a simple blood test to determine if they have X, Y or Z; and many of their symptoms mimic each other.”

Because lab tests often come back as normal, it is very difficult for doctors to determine if a woman suffers from an autoimmune disease, and then to narrow it down to a specific problem.

“Consequently, because tests come back as normal, doctors assume the woman is depressed,” said Susan. “It’s a normal assumption to make because women do suffer more from depression and anxiety than men do. Yet, it is very hard to diagnose other problems being masked by the patient’s symptoms.”

Doctors are generally so busy that it’s difficult to properly evaluate every patient. Walk into a clinic waiting room where a dozen patients are in line to be seen, and it seems as though each person will likely spend just a few minutes with a doctor.

Personal misdiagnoses

Many years ago, Susan was taking hormones for osteoporosis. However, after the hormones were switched, she began experiencing unwanted side effects.

“It was obvious I had no symptoms, then took new medication and started experiencing problems. I was sure it was due to the new medication. It didn’t seem that tricky to understand,” Susan explained. “But, the doctor suspected ovarian cancer.

“After he prescribed a bunch of tests, which showed everything was normal, he wanted to do some exploratory surgery,” she added. “Of course, I got scared and agreed to the surgery, which found nothing wrong.”

As a mother with young children, Susan didn’t want to take any chances. If the doctor’s hunch was correct, then discovering cancer early could have saved her life.

“We could have waited a week or two before taking that step. I wasn’t going to keel over,” she explained.

“However, I didn’t do my own research, nor did I get a second opinion before agreeing to the surgery,” said Susan. “I had all kinds of choices which I didn’t exercise. But, that wasn’t the only time I was misdiagnosed.”

A few years later, she had a biopsy performed. Fortunately, it turned out to be benign. However, the doctor’s condescending attitude really angered her.

“As the doctor was explaining the procedure, I didn’t ask one question. But, at the end of our conversation, I asked what the next step would be if the biopsy came back as malignant,” Susan explained. “He said, ‘Why don’t you just leave the driving to us?’ and he left the room. I really wanted to hurt him.”

Protecting others

Both experiences were in the back of Susan’s mind while she was taking anthropology classes.

“As I learned new information, I would remind myself, ‘Oh, yeah, that happened to me or it happened to a friend,” she explained. “I learned I needed to become my own advocate when it came to my health. That’s true for men and women, but especially for women.”

When Susan conducted her research, nothing suggested male doctors misdiagnosed patients more often than female physicians.

“However, I did learn women doctors will take more time with a patient than a male doctor,” she explained. “If you’re busy and making an appointment during your lunch hour when you need to run in and run out, then you’re better off with a doctor who is male.

“Today, I believe women seem to do better with women doctors. I don’t know if that applies to men who see women doctors, but for women, it seems to be a better situation,” she added.

Susan is not a doctor and is not in a position to diagnose systems herself. But, she is interested in how people behave in medical situations.

“If people learn some skills, then they can focus their visits more along what they need to accomplish,” said Susan. “In conducting my research, I interviewed more than 60 women and many of them were very dissatisfied when they left their doctor’s office.”

Problems are worse for older patients

While medical misdiagnosis can impact women of all ages, Susan feels the problem gets worse as patients get older and ageism kicks in.

“It happened to my mother when she was about 75 years old,” Susan explained. “She did not have a senile bone in her body when she went in for knee surgery. It was an outpatient procedure and she was home later that day.

“But, they gave her some medication for pain. Within 48 hours, my mother was completely bonkers. She couldn’t remember her name and didn’t know who was president,” she added. “We panicked and ran back to the doctor. He took me aside and said, ‘Sue, I know you are a close family, but your parents are getting older and you’re making them feel bad. You just need to let them age graciously.’

“I said, ‘Come on, people don’t get senile in 24 hours,’” Susan recalled. “We threw out her meds and the problem was solved. She had been allergic to something in the medication.

“If something doesn’t feel right, it’s important to intuitively go with your gut and take charge of the situation yourself,” she added.

Women care for others, but not themselves

Chapter One of Susan’s book explains that women perform 80% of all the caretaking throughout the world. But, they often have problems taking care of themselves.

“Researchers gave women a list of five things to prioritize in order to see what they’d put on top,” said Susan. “Most women put their children either first. Then they put their pets, followed by their elderly parents and their significant others.

“The women often ranked themselves last, but that does us such a disservice,” she added. “If women feel lousy and irritable, they often don’t have an appetite, which means they don’t have energy. Because they care for everyone else, they really need to take care of themselves first.

Susan Salenger

“Like they say on airplanes, it’s important to put on your own mask before you help your kids,” said Susan. “That’s so true. Women have to be alert and feel good in order to provide the best care for all the other people who are important to them.”

For centuries, women have been devalued, both with their bodies and the work they perform, she explained.

“A lot of us have internalized that belief to the point we don’t think we deserve to be ill,” said Susan. “Many women I meet feel ashamed for being ill, as though they were falling down on the job. It really surprised me that women felt shame because they couldn’t fulfill their duties when they were sick.”

Many women attributed their illness to stress they were experiencing; however, they blamed themselves for not being able to properly manage their stress levels. It’s even worse for single mothers. Their kids need to be fed and cared for even when mom is sick. Rather than getting rest, she must continue to provide routine services.

“That’s why women hesitate to go to the doctor,” said Susan. “We don’t have the time or resources, such as child care, to be able to practice good self-care.”

Go on offense

Many women are afraid to ask questions about the condition of their health out of fear of offending the doctor.

“It’s one of my pet peeves. We hesitate to get second opinions because we don’t want to be rude,” said Susan. “One woman told me she would never get a second opinion because she was afraid of being labeled as a ‘bad patient.’ She was convinced someone would make a notation on her chart that would follow her the rest of her life.”

People need to realize just how random illness is. Some people got COVID, but others didn’t. Some alcoholics get liver disease and some don’t.

“There is something like 40,000 diseases out there, and those are just the ones we’re aware of,” said Susan. “Consequently, it is so hard for a doctor to make a diagnosis. It’s like looking for a needle in a haystack.

“After receiving a diagnosis, you always want to ask your doctor what led him or her to arrive at that conclusion,” she added. “Then, be sure to ask what other problems the symptoms could indicate.

“Now, you have one or two things to research when you get home to see if the doctor’s diagnosis feels right to you,” said Susan. “If it’s a serious diagnosis, then always get a second opinion.”

Too many people view seeking confirmation from another doctor as being confrontational in nature.

“But, it isn’t confrontation; it’s collaboration,” she added. “I’ve never had a doctor object to me wanting a second opinion.

“In fact, one doctor told me he preferred I get a confirmation. That way, if there was any question of malpractice, then he had another doctor backing up his own opinion,” said Susan. “I’m not litigious in the least, but I understood perfectly what he was saying and I thought it was an excellent point.”

Because people tend to see whatever they expect to see, a diagnosis can vary from doctor to doctor. For example, if someone experiences a pain in the elbow, a psychologist may say it is the result a stress. A rheumatologist may claim it is the result of arthritis, and a chiropractor will say the joint needs adjusting.

“So, if someone encourages you to undergo any kind of serious treatment, you should get a second opinion,” said Susan.

Write it down

One way people can take control of a medical appointment is to arrive at the doctor’s office with a written list of symptoms which are prioritized by level of pain or frequency of occurrence.

“If anyone is like me, he or she will get so anxious at the appointment, they will forget half of what they want to talk about,” said Susan. “There is nothing like a written list, whether you use pen and paper, or keep it on your phone.”

When doctors are talking about specific illnesses or medications, Susan encourages patients to ask physicians to spell out its clinical name. That way, when people get home, they can go online to educate themselves about the illness or the drug.

Susan Salenger

“By looking it up, you can better determine whether or not the diagnosis or prescription feels right for you,” she added.

The third thing all patients need to do is tell a doctor when they don’t understand something.

“I found a statistic that 85% of women will walk out of a doctor’s office not really understanding what they’ve been told,” said Susan. “It’s a shocking statistic.

“It doesn’t matter what gender you are, it’s important to repeat back what you heard using your own words,” she added. “This gives patients a chance to verify they heard the doctor correctly. However, it also gives doctors a chance to confirm what was said, or correct it in case a patient may have misunderstood.”

Doctors also like it when patients bring in a list of symptoms because it allows the physician to prioritize the list as well.

“One doctor told me about a male patient who came in for a visit. When the exam was over and the doctor was heading toward the door, the patient noted he had a mole on his back,” said Susan. “To the doctor, the mole was the most important symptom, so she turned around and started the exam again. If the man had presented a list of symptoms, she would have ranked the mole first.”

Consulting Dr. Google

“The most valuable thing about my book is the resource list at the end. It contains all the websites I found that were the easiest to use and offered the most accurate information,” said Susan.

Susan said she’s in favor of patients researching things online. Yet, they must exercise caution because there is a great deal of misinformation on the internet.

“It’s so hard to sift through online information to determine what is accurate and what is not,” she explained. “Having a doctor write down the name of what you might have actually gives you something to grab hold of and look up.

“For example, if you go to Mayo Clinic’s website, you can read an overview of an illness, see symptoms, understand the diagnostic process and learn about common treatments,” she added.

Emotional aspects of illness

Because women tend to talk a lot about their emotions, Susan suspects that’s why they tend to receive a psychological diagnosis more often than men.

“Let’s say I have a sore throat, which is relatively nothing, so to speak,” she explained. “But, I tell the doctor how I feel about that and how it’s interfering with my life. Then I ask if there is an antibiotic I should be taking, and on and on.

“In response, the doctor often says something like, ‘Are you sure you’re not just stressed?’” said Susan. “Of course I’m stressed. I have a store throat, I don’t feel good and I can’t take care of my family like I need to.

“That’s why women tend to get a psychological diagnosis because they suffer from depression and anxiety more than men,” she added. “Sometimes the diagnosis is accurate, so it doesn’t necessarily mean a doctor is blowing you off.”

Other times, the opposite occurs when women neglect their emotions, especially when talking about recovery. Susan has interviewed a number of women who had a hysterectomy.

“When a woman has her ovaries removed, that really affects her hormones, and hormones affect emotions,” said Susan. “But very few of the women I met ever asked their doctor whether there will be any kind of emotional repercussion from the procedure.

“A lot of women became depressed after surgery, even though they were feeling better physically,” she explained. “They thought there was something wrong with them because they were so depressed.

“However, before surgery, all the woman asked about was how long the physical recovery would be, if she could drive, and whether she would be able to take care of her kids in a way she was accustomed to doing,” said Susan. “It’s interesting that we often talk about our emotions very well when we are addressing symptoms, but completely neglect our emotions when talking about recovery.”

More prescriptions

Women are often prescribed more medications than men for three reasons, Susan explained.

First, they suffer from more chronic diseases. Second, women tend to experience depression and anxiety more often than men. Third, drug companies actively target women in advertising.

“Pharmaceutical companies aiming drug ads primarily toward women is something which disturbs me the most,” said Susan. “That’s because women make the majority of purchasing decisions when it comes to healthcare for families.”

Susan’s research showed the United States and New Zealand are the only two countries to allow pharmaceutical companies to market to consumers.

“Notice how many pharmaceutical ads have women and children in them. That’s because women are caretakers,” she explained. “Studies have found when women think a drug being promoted implies she can take better care of her kids, then she’s going to get it.

Susan Salenger

“Up to two-thirds of people who see a drug ad eventually take some sort of action,” Susan said. “Patients either call their doctor to make an appointment after seeing the ad or specifically ask for the drug when talking to a physician. It’s a very effective marketing strategy.”

Doctors also feel when someone asks for a specific drug, there is a better-than-average chance the patient will follow-thru and take the medication.

“Doctors like compliance with prescriptions,” said Susan. “However, drugs which are advertised sell nine times more than drugs which are not.”

Can patients trust healthcare providers?

When it comes to health, people have been through a lot in the past three years. There is an alarming number of people who say they no longer trust doctors, clinics or hospitals. People feel as though they’ve been treated like human guinea pigs by over-prescribing prescription drugs rather than zeroing on root causes.

Despite her research, Susan remains a huge believer in science and medicine.

“I think our doctors are terrific. There are some lemons because some doctors are more competent than others,” she explained. “But, that’s a given in every profession, from hairdressers to plumbers to doctors.

“Look at COVID, for example, and how fast scientists were able to develop something that prevented thousands of people from dying,” said Susan. “So, I think it’s really important to trust your doctor.”

Yet, people still need to take charge of their healthcare by doing their own research and getting second opinions when necessary.

“Don’t be like me and agree to a surgery you don’t think you’ll need,” said Susan. “It takes time to process information. So, give yourself some time to settle down, think it through and look it up before making a final decision. There are a ton of support groups you can tap into.”

Susan recently spoke with a woman who admitted she stopped going to the doctor.

“Please don’t do that. That’s how a minor problem can become a major one,” she explained. “I’m not suggesting in any way, shape or form that people stop going to the doctor.”

Don’t become “sidelined”

Susan’s book “Sidelined: How Women Can Navigate a Broken Healthcare System,” is a manual to help people better manage healthcare appointments by providing skills which sharpen their focus during visits.

“I offer some specific skills which will help you feel comfortable with a diagnosis you receive,” said Susan. “There are certain things you need to know in order to handle yourself more effectively. My book is about improving patient behavior.”

Although most of the book, especially statistics, is targeted specifically toward women, there are certain behavior skills which apply to any gender. Her book provides a lot of helpful information, but Susan said the resource list at the end makes it a valuable resource for any family.

“My ultimate goal is to help empower women to take better control of their doctor visits, which, in turn, allows them to take more control of their health,” Susan said.

People can find the book at Amazon and other bookstores. To connect with Susan, visit www.susansalenger.com.

If anyone buys Susan’s book from one of the above links, Forward From 50 may receive a small commission.