Note from a PCOS Patient

CW: eating disorders, bullying

I grew up in an inescapable epicenter of toxic health culture and thin-ness, from girls doing juice cleanses in elementary school to calorie trackers making on appearance on everyone’s phone as early as middle school.  I did my first juice cleanse in fifth grade.  And halfway through that year, I was fully in the throws of anorexia, eating 300-500 calories a day at the age of ten.  I exercised obsessively.  I sucked in my stomach 24/7.  I was so sick and tired of being labeled as the “fat girl” that anything was worth ridding myself of that label.  At the age of seven, my own grandmother had called me fat too.  I remember in seventh grade I brought the boy I had a crush on heart shaped cookies on Valentines Day.  He took the cookies and later sent one of his friends to tell me he thought I was a “fat pig.”  No matter how much weight I lost, I still managed to be “fat” in the eyes of my peers.  All the while, parents were asking my mom how I lost the weight because they wanted their daughters to lose weight too.  Despite the bullying, the minimal recognition of my weight loss further pushed me to restrict.  The world around me was at war with my body for reasons I did not understand as a child.  While I didn’t know why people including myself wanted to be thin, I knew that being skinny was worth every night without dinner just to shrink my waist. As a result, my anorexia lasted five years into freshman year of high school when I finally got a therapist and realized that I had an eating disorder.  

The plan my nutritionist and I had set out was clear: I would eat according to her specifications and gain about 20 lb. in the first month, and about 10 of that would fall off as my metabolism adjusted.  But I ended up gaining almost 30 lb. in the first month… and none of it fell off.  At the weigh in, my nutritionist brought me a questionnaire with unspecified symptoms listed, from excessive body hair growth to wildly heavy menstruation.  I checked all the boxes.  She concluded I might have PCOS and sent me to an OBGYN to get tested.  

That appointment stands out as one of the most upsetting moments of my life.  The doctor refused to test me, claiming the reason for all my problems was simply that I was fat when my weight was not even outside a healthy range.  I explained that I was in anorexia recovery.  I explained that I was under a nutritionist’s care and that the weight gain was the reason for me to get tested.  She didn’t buy any of it.  When she finally caved after degrading me for an hour, the phlebotomist carelessly stuck the needle so far into my arm that they hit a tendon.  

The test came back as a false negative, and it wouldn’t be until a full year later that another OBGYN actually took me seriously and performed an ultra sound.  I lit up like a Christmas tree.  The nurse said it was the worst case she’d ever seen on anyone under 25.  

PCOS is not a straightforward illness.  The symptoms vary between individuals, and no two cases are exactly the same.  In my case, the symptoms were never quiet.  I would menstruate for 15 days at a time with cramps so bad I could not get out of bed some mornings.  My hair was so thick that I bled profusely the first time I waxed.  I was covered in acne.  My metabolism is remarkably slow, thus preventing me from ever being “thin” no matter how little I eat and how much I exercise, hence no one “believing” that I was anorexic in the first place.  

Even eating 500 calories a day, I never looked sick according to what society perceives anorexia to look like.  I was congratulated for extremely unhealthy behavior because to the world around me, I was improving.  Yet, I was also never thin enough to be perceived as physically attractive, forever stuck as the fat girl who is “trying,” who is “improving,” who has realized the fault of her physical form and is desperately trying to conform.

Being a young woman with PCOS is not an experience I would wish on anyone.  In addition to the oftentimes painful symptoms, my medical reality is different from many others.  People with PCOS have a significantly increased chance of getting endometrial cancer.  We also live every day knowing a cyst could burst at any minute, potentially sending us into excruciating pain and surgery.  Those with PCOS have an increased chance of developing diabetes, high blood pressure, depression, anxiety, and eating disorders too. PCOS is a chronic illness that makes itself heard. 

But perhaps the loudest symptom in my life is that those with PCOS are significantly predisposed to infertility, and while IVF can be effective, it’s never certain.  From the age of sixteen when I got my official diagnosis, I have known this.  Through other young women’s conversations about futures with families, I have stayed silent not knowing whether this future is even a possibility for me.  

Chronic illnesses surrounding women’s reproductive health are silenced as taboo and made up.  While my mental health and body image were deteriorating, people were too concerned either calling me fat or complimenting my weight loss to actually take a moment and talk to me about why my weight was changing.  When we compliment weight loss as intrinsically good, we normalize the idea that thinner is better and that no one should be comfortable in a body that is anything but thin.  We allow chronic illnesses and mental illnesses from getting the care they need.  

Additionally, when we only normalize one idea of what women should want with their lives, we exclude those who are physically incapable of such a path, as well as those who simply might not want children.  My journey with PCOS forced me to be hyper aware of societal constructions dictating what defines desirable femininity and female existence.  No human with a uterus is just on this earth to reproduce.  We are humans, not baby machines, and are capable of so much more.  No one’s value should be based on their reproductive capacity.  

Needless to say, please be kindly quiet.  Do not make comments on anyone’s weight when you don’t know what they’re going through.  Do not assume every young women wants children, or that they can have them.  Such assumptions reinforce the idea that there is only one correct path for someone based on biased and absurd criteria.  We are all different.  We all have different lives in the present and in the future.