Being In Control
I have not publicly shared my diagnosis yet, but I think it is about time since my senior thesis/project revolved around it. Although living with my condition has presented its challenges, I am privileged to speak about it. For the sake of conciseness, I will try my best not to go deeply into the sociological issues that relate to my diagnosis, as mentioned earlier.
I have always been a planner. When I was a child, I often was unable to engage in activities aside from dreaming. I could dream about what I would say when I was mature enough to be heard. I would dream about what I would do once I became a model. I would dream about clothes I could not afford and dolls my parents would not let me have. As I grew older, these dreams changed; I now imagined jobs I might have, who I might fall in love with, or how I could look if I maintained my diet. I did not, however, plan about having a condition that would keep me from dreaming.
In 2018, I was diagnosed with anxiety and depression. While this was extraordinarily troubling for me, I honestly thought my health problems would stop there. However, in August 2019, I was diagnosed with Polycystic Ovarian Syndrome (PCOS), a condition that impacts 10% of all women—yet is rarely discussed. This condition is a series of symptoms caused by imbalanced hormones, resulting from small cysts all over the ovaries. Most women have difficulty getting diagnosed because even doctors are not sufficiently educated about it (which is a worthwhile discussion on its own). Usually, women experience a series of symptoms and are diagnosed; they then use blood test results to prepare for other symptoms. My experience was slightly different, as I was diagnosed after an ultrasound, having suffered from seemingly random symptoms for months.
Allow me to deviate from the topic at hand slightly. Essentially, the more contemporary state of sex education has failed to adequately prepare women or men to face issues—such as PCOS—or explain the proper procedures to pursue if issues should arise. I knew that my body was not working right after experiencing my first period when I was 12. I was told that it was supposed to repeat every month, but mine did not. My doctors dismissed the issue until I was 20, where I finally demanded to be referred to an OBGYN. I concede that I am no health expert. Still, after my hectic and anxiety-inducing experience, I firmly believe that women should see a reproductive health specialist as soon as they get their period, period.
Returning to my previous narrative, I knew something was wrong when I suddenly gained 30 pounds over two months. I was not one to continually be on the scale, but when pants that you spent $25 on a few months ago suddenly do not fit you, you realize that you either washed them wrong or something else may be afoot. After blaming myself for a few weeks and adjusting my diet and exercise, I only gained more weight. Moreover, I was always tired, no matter how much I slept or how much coffee I drank. One day, I woke up and had completely lost sight of my left eye; I experienced an ocular migraine that lasted a whole day accompanied by a numbness that lasted a week. When I finally returned to work, my boss took me aside to check on me. Her concern, compassion, and kindness urged me to get my thyroid checked by my doctor. She also adamantly instructed me to force the doctor to refer me to an OBGYN. I was shocked when the OBGYN initially wanted to wait a whole year before checking on my symptoms; however, after a full breakdown, she
caved and gave me an appointment for an ultrasound—the only test which could potentially locate the cause of my symptoms.
A few weeks after my ultrasound, I sat impatiently in my doctor’s office at my follow-up appointment. I just wanted an explanation. The doctor came in, explaining to me what they saw. I had small clusters of tiny cysts on my ovaries, and, as a result, I was diagnosed with Polycystic Ovarian Syndrome. These cysts are what had prevented me from getting regular periods most of my life. These cysts are what had caused me to have acne and facial hair. These cysts caused the hormonal imbalance that resulted in my anxiety, depression, weight gain, and severe migraines. These cysts are what could prevent me from bearing a child one day. Everyone reacts to a diagnosis differently. For me, it felt like my entire life had been snatched from my hands and all those dreams were now just a tease to things I may never have. However, this story is not one of pity, but rather one of hope.
These past six months have been a roller coaster. I have tried various diets, but I have learned that my body does not react to nutrients as it does for most people. I can eat a grape and be bloated for a week, whereas ghee has proven beneficial. I am learning that the scale cannot determine how I present myself daily and that pants can reject my body, but my clothes should never dictate my attitude. However, most women with PCOS face difficulties with confidence and self-love—myself included. And, unfortunately, it makes sense. How can one be confident when they do not know how their body will react consistently to food, medication, etc.? How can one be confident knowing that any ovarian cyst can burst randomly and possibly cost one their life? How can one feel confident having to shave their face every day in a society where being a woman and having facial hair is considered unprofessional and unappealing? It is hard to give yourself hope when you are struggling with these experiences and feel like you are alone.
Six months since being diagnosed, I have decided that I do not want to feel alone anymore. I am creating a community of women around my local area with PCOS to do a styled wedding shoot for my senior thesis/project. I want to bring women who struggle with PCOS together to be my models to prove to them (and the world) that they are beautiful and their futures are bright. I am compiling a list of vendors who support this cause and donate their services (florists, bakeries, venues, boutiques, etc.). As a photographer, my job has always been to show the beauty in people and in our world. There is no better way to use my passion than to eliminate our fears and anxieties over things beyond our control.