Women’s pain and medical symptoms are often not believed or are downplayed by doctors. This causes patients to doubt themselves. It also can put lives, especially lives of women, at risk. This is medical gaslighting and women are much more likely to experience medical gaslighting than men. Today we’ll explore more about what medical gaslighting is and how to advocate for yourself.
My medical journey and medical gaslighting experience
Today I want to tell you a story about my own medical gaslighting experience. When I was 23, I had just graduated college and I had to go to the emergency room after having two days at home of extreme nausea, nonstop vomiting, and extreme extreme abdominal pain. If the pain scale was one to 10, my pain was a 25. It was very, very bad. I couldn’t keep anything down and I was extremely dehydrated. I had thrown up so much that my stomach was empty of bile. A visit to the ER was necessary. This was the first of four visits that I would make to the ER throughout the remainder of 2011.
Now, after going to the ER, the doctors put me on a medical journey. I had a colonoscopy, did fecal testing and did blood work. Overall, I underwent a lot of tests to try and figure out why I was going to the ER so often. But I never got a diagnosis, at least not in 2011. Nor in 2012, or 2013, 2014 or 2015.
It took me 12 years to get a diagnosis
I didn’t get diagnosed until February 2023. 12 years later! Why didn’t I get a diagnosis? All those trips to the ER, all of that testing, and nobody was able to figure out what I had? It’s because I was a young and seemingly healthy woman. Women face a wild amount of discrimination in the medical industry. Women’s pain is often not believed by doctors. I believe that I experienced that.
Medical professionals didn’t think that a young, 23-year-old who had been a college athlete, who didn’t have extreme weight gain or extreme weight loss, or any outward signs of being sick was truly sick. In fact, one doctor completely dismissed me, after I told him that I thought I had the disease that, spoiler alert, turns out I do have. He looked me square in the eye and said, “You don’t want that disease. It’s not a good time.” I was so shocked when he said that. But I also thought, “Advocate for yourself.” So I said, “I don’t want it, but I think I have it.” And he literally waved his hand in my face.
I think about that all the time. I really want to go back to that doctor with my official diagnosis and slap it on the desk in front of him.
Medical gaslighting most often happens to women
Medical gaslighting, like what happened to me, happens every single day to patients of all ages, races and sizes. This is not an attack on health care providers, but we have to talk about medical gaslighting, because it’s happening to so many people. In particular, it’s happening most often to women.
Because medicine rarely includes women. I mean that on every level. From being a part of healthcare studies and medical trials, to even getting treatment or to becoming healthcare providers, women are deeply absent in medicine. Women are the providers of society and women are the caretakers of society. So for an entire industry built on caretaking and the health care to not include women is bonkers to me.
A 2023 study entitled “Lifetime Employment-Related Costs to Women of Providing Family Care,” finds the amount of time women spend providing essential care to children and adults has a substantial personal economic cost that continues long after the caregiving ends. The estimated employment related costs for mother’s providing unpaid care averages $295,000 over a lifetime, based on the 2021 US dollar value and adjusted for inflation. Unpaid family caregiving reduces a mother’s lifetime earnings by 15%, which also creates a reduction in retirement income.
Women are care providers, but aren’t being cared for
Women are the ones who are taking care of everyone else. But as women, our pain, our symptoms and our bodies are not believed or included. This is egregious. Very few people are studying women’s bodies. Women are commonly excluded from healthcare studies. For example, if a new medicine is being trialed to see does this help with heart attacks or cognitive decline, women are usually not included in those studies. So we have no idea how those medicines impact women’s bodies.
This is very dangerous if we have no idea how a drug will impact a woman. How can we prescribe that drug to women, and this bias impacts all women. Black women, for example, are three times more likely than white women to die in childbirth. How can we tell black women to confidently go to the hospital and give birth when we have numbers like that? The reality is that, as a woman, you need to advocate for yourself in a system that often ignores you.
The reality of the American Healthcare system
As a woman, I often feel stressed about going to health care providers. I feel that I need to convince the provider to take me seriously before we can even discuss a plan of action for my healthcare. When I go to the doctor, I bring a folder of papers with me that has detailed documentation. The documentation includes all of the tests I’ve had, the procedures I’ve undergone with dates, and other doctors feedback, so that I can just present it to the doctor. I do this because I feel like they will take other doctors words more seriously than my lived experience. I shouldn’t have to do this. In a system that is so expensive and so inefficient, patients must also be their own advocates. Unfortunately, that is the reality of healthcare in America right now. I would love to see that change.
How to advocate for yourself
In the meantime, I have a few tips for you if you are a woman or anyone who feels that they need to advocate for themselves in the current healthcare system.
Tip 1: Bring documentation
The first tip is to bring documentation. Be meticulous about the way that you document your own health care. So every time you go to a doctor’s appointment, ask them to give you a print out of what happened during that doctor’s appointment. If you had bloodwork taken, if you asked for a certain procedure, make sure that there’s documentation of that during the appointment. Then, you can keep that paperwork with you put it in your file and make sure that you have a copy of it.
If you are taking medication or you are going through a series of testing, put together a documentation of what procedures you’re getting, what medicines you’re on, and when you start taking them. I personally use a spreadsheet for this, so I have my health care costs as well as my health care procedures all in one document. I have the date, I have what the doctors feedback was, and I have what happened on that date, so that I know the timeline of what I’ve been through. This is another piece of information you can share with your healthcare team. And it also helps you on the back end, keep track of, yes, we’ve already tried that. No, we haven’t tried that. Here’s how I reacted to that, et cetera, et cetera.
Tip 2: Know your rights
Number two is to know your patients rights. You should familiarize yourself with the Patient’s Bill of Rights before you see a doctor. The Patient’s Bill of Rights comes out of the Affordable Care Act. It was a collaboration between the Department of Labor the Department of the Treasury and the Department of Health and Human Services.
The Patient Bill of Rights includes things like a patient has the right to respect dignity and comfort. The Bill of Rights also states that a patient has the right upon request to be given the name of his or her attending physician, the name of all other physicians participating in his or her care, and the names and functions of other health care persons having contact with the patient. It is your medical right to know who’s treating you what you’re being treated with and how you’re being treated. Familiarizing yourself with the patient bill of rights is going to give you more understanding of how you can effectively communicate with your healthcare team, as well as how you can effectively stand up for yourself.
Tip 3: Be persistent
And my final tip for advocating for yourself in the healthcare system is to be persistent. If you’re not getting the care that you want, or you’re not getting the type of care in the type of way that you want. Please ask your healthcare team to change their approach. If you’re being given one drug and you want another drug, ask your healthcare team to change that. If you are not being seen on the schedule that you want, you can ask to change providers or to change that schedule. Advocating for yourself also includes how you want to be treated and what you want to be treated with.
I know it’s difficult to advocate for yourself, but your health is truly on the line. If you’ve had a similar medical gaslighting experience, I’d love to hear about it in the comments.
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