Gaslighting in the medical industry and what you can do about it
I’ll begin with how the story of my misdiagnoses ended. After 15 months of advocating for myself and insisting that something is wrong with my body to six different doctors, I finally got the diagnosis no one wants to hear. Stage III Hodgkin Lymphoma. In the time that doctors insisted it was simply postpartum hormonal issues the cancer had spread out from my lymph nodes and into my spleen, which would require 6 months of aggressive chemotherapy.
The pain of women, and more specifically women of color, are routinely ignored or dismissed in the US medical industry. I’m not basing this only off of my past experiences, or those of my fellow women and women of color — the statistics tell an equally alarming story. For example, did you know that US ranks last in maternal mortality rates among industrialized nations? It has nearly double the number of maternal deaths per 100,000 live births compared to other high-income countries like Canada, France and UK (1). Or how about the fact that Black women are 2.5 times more likely than white women to die in childbirth, often getting less pain management medicine and referrals to specialized care (1, 2). Even in clinical trials for cancer, women and women of color don’t get adequate representation, which often leads to adverse effects in treatment (3).
This article is not a complaint about a specific doctor or practice. It is about calling attention to the lack of training on bias and empathy in the medical industry as a whole, which leads to inferior care for women and women of color like myself, and curating some helpful suggestions on how to prevent that.
So, what can we do to ensure proper health care when the system doesn’t work for us? Unfortunately, there are no easy answers and most of what I’m about to suggest requires a lot of effort from ourselves and our loved ones, which is difficult when you’re sick or in pain. I would also be remiss if I didn’t acknowledge that even with a lot of effort, proper care is not guaranteed. But we have to try, since there isn’t a better alternative. Below are some suggestions based on my own past struggles and those of my fellow women of color.
Suggestion 1: When gaslit, remind yourself that the bias for women and women of color is real.
Arm yourself with the statistics and knowledge that show how real the bias is for women and women of color in the medical industry. That way, you won’t get gaslit into believing everything is okay when you know you’re not. For my lymphoma, my main symptom was severe itching and a rash all over my body. One of the six doctors I went to told me to “just stop scratching” and that the scratching was a manifestation of stress or body image issues. I remember going to my car and crying because at that moment I believed what the doctor said and thought the pain and discomfort was all in my head. It took my husband’s reminder of all the other symptoms I was facing – extreme night sweats and fatigue – to get the doctor’s words out of my head and seek care elsewhere. Because of that incident and others, I now carry a written affirmation with me whenever I go to the doctor’s office, “My pain is real, and I deserve care.”
Suggestion 2: Have a written and rehearsed list of questions and statements for your doctor.
Raise your hands if you have waited months for an appointment, only for the doctor to come see you for a few minutes and then leave without any real answers. To prevent this, I started to take a list of written questions, so that I wasn’t caught like a deer in the headlights as the doctor started to exit the room. Not only that, I started to rehearse statements that insisted on diagnostic confirmation, pain management, and follow-up plans, which were often not provided unless asked. I also found it helpful to have some statements to counter the bias that often gets thrown at you, instead of staying silent and feeling upset later on. Here are some examples you can use.
Phrases to seek diagnostic confirmation and other answers:
Example 1: Are there any tests or imaging we can do to confirm your hypothesis/diagnosis?
Example 2: I see that you are assigning most of my symptoms to my postpartum hormones. Can we do some tests to confirm that?
Example 3: Is it possible that the symptoms would appear differently in a darker skinned person like myself?
Example 4: I still have a few questions from my list that haven’t been answered. Can we go over them?
Phrases to ensure pain management and follow-ups:
Example 5: Can we talk about how to manage my pain and symptoms while we await test results?
Example 6: My daily life is being severely affected by my symptoms and pain. Can you give me ways to manage that?
Example 7: How can I contact you reliably and quickly for follow-up questions or in case my symptoms get worse? Does this method work for weekends and holidays?
Phrases to interrupt bias:
Example 8: I noticed that you said my weight was the reason for most of my symptoms. Could there be any other underlying reasons that we are missing?
Example 9: Saying I have a low pain tolerance makes me feel like I am being dismissed. After all, pain is the body’s way of letting you know when something isn’t right.
Suggestion 3: Seek care elsewhere until you are satisfied.
If your current doctor is not giving you the care that you deserve, keep searching for a better doctor who will. Reach out to family, friends, and your community for suggestions. Some insurance companies now have a concierge nurse who can help with recommendations. There are also local community care clinics that can pair you up with the doctor you need, especially if your insurance does not give adequate coverage. I know this process is exhausting, but please do not give up and accept substandard health care for yourself. There is a better doctor out there who will give you the care you need.
Suggestion 4: Don’t suffer alone.
From when we’re young, society teaches us women to feel ashamed about our bodies. Why else do we whisper about periods, stay silent about our miscarriages and just grin and bear through so many serious medical issues? We have to unlearn that way of thinking and stop feeling ashamed about what’s happening to our bodies. Whether it be UTIs, yeast infections, periods, miscarriages, pregnancy, post-partum issues, endometriosis, PCOS, thyroiditis or cancer, we have to destigmatize women’s health issues. And that starts with us talking about what’s happening to us. Don’t suffer alone. Involve family members, friends, and loved ones in your health care. Candidly tell them how the symptoms are affecting you and your daily life. Enlist their help when you’re researching doctors or writing out questions. Finally, if possible, bring someone with you who can also advocate for your behalf to the doctor. And although it pains me to say this, sometimes bringing a male partner, family member or friend may prove to be effective. There have been many times when the doctor listened to my husband, even though I repeated the same suggestion several times before.
While these suggestions are not perfect, I hope they will help you get better care in the medical industry until the system changes for the better. Remember, your symptoms and pain are real and you deserve proper health care. If you need more help with your unique situation, don’t hesitate to send us a message on our social media or email us at contact@abetterforce.com . We’re rooting for you!
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