Learning to Advocate For My Health
I was 16 when my mother was diagnosed with breast cancer, and 23 when she died. I was 27 when I found out that I had PCOS, and 28 when I found out that I tested negative for the common genetic markers for BRCA.
The combination of having a family history of breast cancer and having PCOS myself is what pushed me to go for BRCA testing. As soon as I understood the personal ramifications of having an immediate family member with breast cancer, I was terrified to find out more. I figured that if I didn’t know, I didn’t have anything to worry about. Besides, I was too young to start thinking about going for mammograms and GYN exams. I figured that being young and not sexually active, I didn’t need to worry about these things.
For most of my post-hitting-puberty life, I had fairly regular periods with very little discomfort – nothing to worry about (I was lucky, I know). And then out of nowhere, the spotting started.
I had never spotted before, and then the bleeding didn’t stop. After two months of constant bleeding, several pelvic exams, and a couple of rounds of antibiotics to try to rule out other viruses, I was sent for a pelvic ultrasound. I asked around among a very select group of friends so I would know what to expect, and I couldn’t have heard worse. Friends told me it was agony, that their tech was unsympathetic to their discomfort. “Labor is worse,” one said. “I have other patients with worse pain than yours,” said another about the response from her doctor about her bad cramps.
Other friends have told me the terrible things their doctors have told them over the years, and I immediately refer them to my excellent healthcare providers. My diagnosis wasn’t an overnight thing – not by a long shot – but now that my doctors and I know what’s wrong, we know how to treat it.
Thankfully, birth control pills have worked wonders for me. Within 48 hours, the bleeding completely stopped and I had my life back. I stopped having to worry about making sure I was near a bathroom everywhere I went. I didn’t need to be stealthy in what I brought with me in excusing myself to the bathroom all the time. My periods have been significantly lighter (they had gotten increasingly heavier within the year before the diagnosis), and I really am starting to feel like those ladies in the tampon commercials we all know can’t possibly be real; I’ve even managed to wear a white skirt with very little anxiety that I would stand up and find any red marks on the back of my skirt!
I have since been more vocal among my friends about advocating for themselves when it comes to their health, and I’m learning more and more with every conversation. I’ve learned about “Female Hysteria,” a bit about Endometriosis, and quite a bit about PCOS. According to Wikipedia, “Female Hysteria” was once a common medical diagnosis for women. Female Hysteria was once thought to be a disease caused by what people in the medical field used to call “the migrating uterus.” They believed that a woman’s uterus did not have a set place in a woman’s body and that the movement caused a woman to have physical and psychological problems. In and of itself, it isn’t a very specific “disease”- if a woman was exhibiting any symptoms that a doctor couldn’t figure out, it must have been because of her “floating uterus.”
While we have since disproved this theory, its effects are still present among medical practitioners, be it conscious or not. Translation: you are a woman, therefore you exaggerate your symptoms and reactions. You’d be surprised (or, like me, appalled) that both male and female healthcare providers alike are still swayed by this, many not realizing the origins of their perspective. Just Google the words “female hysteria” and see the articles and suggestions in your search – it will be very enlightening.
I was chatting with friends a few months ago and one mentioned that her cramps were so bad, she felt like she was dying. Those were the words she used. She and I aren’t particularly close, so I didn’t know whether she was exaggerating and using the words lots of people use casually, or if she really felt that awful. It came up again a few days later, and I strongly suggested that she talk to her doctor. She kind of walked it back, as so many women do when pushed to confront, so that’s where we left it. So many of us don’t think that we will be believed.
I don’t have a background in medicine, but I have a hard time believing that the sign that our bodies are able to reproduce should cause us so much suffering. We deserve more than this pain.
Learn about your body. Ask questions if you don’t know something (believe me, I’m still kind of embarrassed by how much I don’t/didn’t know about my own body), and make sure to ask someone who will give you accurate information and won’t make you feel judged for asking. If your doctor makes you feel bad for something you tell them about your body, find someone else (I’d be happy to recommend my providers in NYC). What they say is true, knowledge can give you the power to take control over your health journey.
Sarah Gross graduated from Stern College with a BS in Business and Management. She is currently the Office Manager at Shearith Israel (the Spanish and Portuguese Synagogue) and has been in the Jewish non-profit world for 6 years. Her free time is spent reading on her couch, watching movies on her friends’ couches, and being the tall person who gets things from the top shelf for strangers at the grocery store.