Reflect on the life of Henrietta Lacks, a Black woman whose cancer cells were harvested by researchers without her consent, revolutionizing the face of medicine forever—without any compensation provided to her or her family. There is also J. Marion Sims, “the father of modern gynecology;” he performed experiments on enslaved women without anesthesia, or any kind of numbing technique, under the belief that Black people did not feel pain in the same way that white people did. Systemic racism is, historically, part of the health care industry—the effects of which do not remain in the past. We saw this with Serena Williams after she gave birth to her daughter and was forced to advocate for the CT scan that would save her life. In fact, Black women die in childbirth three to four times more often than white women.
So what is it like to navigate multiple systems of oppression in everyday life, but especially when seeking health care? I’m Black, fat, and femme, living with a chronic physical illness and mental illnesses. I can tell you that self-advocacy in doctor’s offices is incredibly difficult when no one will listen to you.
I had been on antidepressants for eight years before I finally found out, through my own research, that not only was I taking the wrong dose—I was taking a medication that was not a good fit for me and my diagnosed conditions.
Those eight years had lasted through my adolescence, when the effectiveness of medication doses often lessens due to body changes. Yet, no doctor who refilled my prescription for eight years ever thought to adjust the dosage. When I finally saw a psychiatrist to discuss a new medication, his exact words to me were, “Well, you seem fine.” He said this after requesting my symptoms and previous diagnoses, which included anxiety, PTSD, and major depression. Because I could articulate my mental illness without turning into a blubbering mess, his professional medical opinion was, “You seem fine.” I left his office with the same prescription that I came in with—the wrong one.
If that psychiatrist had simply taken the time to learn my symptoms, then he would have known that they do not manifest externally—which is the stereotypical way folks tend to think about mental illness. I wasn’t randomly sobbing or moping around like Eeyore from Winnie the Pooh. My anxiety didn’t show up in the form of me hyperventilating into a paper bag. My PTSD did not show up in the form of me reenacting my trauma as though I was thrown into a flashback. My symptoms show up physically: migraines, nausea, fatigue, back pain, and digestive issues, for example. For a long time I saw these as separate health issues, so rather than treating the cause, I sought to treat the symptoms with little understanding from doctors.
Here are just a few instances of this happening. The migraine specialist spent the majority of my first appointment lecturing me about exercise and my weight, never even once relating it to my chronic migraines. After experiencing chronic back pain for over two years, I sought out every form of treatment from specialists and heard every theory—from my breast size to “you should see a psychiatrist,” none of which actually worked to alleviate my pain. After experiencing a lack of understanding, patience, or care at every doctor’s visit, I began realizing that my identities of Black, fat, and femme—combined with their complacency in an oppressive institution—were the reasons why I was not receiving decent medical care.
Dealing with racism, sexism, the medical research gender bias, fatphobia, and the stigma of mental illness is the reality of the medical system for millions of people. But I deal with them all at the same time.
I have found myself wondering again and again: Is this doctor not listening to me because I am [insert marginalized identity here], or is it because I’m wrong about the condition I’m seeking treatment for?
There are so many factors involved when trying to access health care, it is easy to overlook how you are being treated by medical professionals. After all, they are the professionals, right?
From not being believed, to getting labeled “hysterical” or “dramatic” if you have a mental illness, to any condition being blamed on your fat body, to even avoiding treatment all together because of racist medical practices (the Tuskegee experiment comes to mind), these are the realities for marginalized folks navigating the health care system. Do you wait until it’s too late for someone to finally believe you—or do you continue putting yourself through dehumanizing doctor’s appointments where no one will listen to you anyway?
Self-advocacy is incredibly difficult when facing discrimination, but I’ve learned how important it is to find ways to advocate for myself.
The fact is that no one knows your pain better than you. It helps to have someone else there willing to advocate for you when you can’t, or when it proves to be too difficult. My partner now comes with me to my doctor’s appointments to make sure I am being heard. If you have a friend, parent, partner, or loved one who can be this person, ask them to join you. It will feel like you have someone in your corner.
Though it is hard to face medical professionals who make you feel like just another cog in the wheel, do not fear being persistent until you find the answers you’re looking for. That may mean seeking a second, third, or fourth opinion until you find a doctor who takes the time to understand what you are going through. This is your health, and you deserve to be seen and heard.