Polycystic Ovarian Syndrome (PCOS) is by no means a rare disorder. Affecting 1 in 10 women of child-bearing age, the autoimmune disorder causes follicles containing immature eggs to grow inside of the ovaries altering hormone levels inside the body. It also causes an increase in male hormones causing irregular menstruation, heavier bleeding, an excess in hair growth, weight gain and if not carefully monitored, infertility.
Final year Theatre Arts student Jhaneil Smith noticed as a high school student her irregular periods and tendency to grow more facial hair than her peers but dismissed it as a minor detail about herself. It wouldn’t be until years later on the cusp of her young adult life that her minor problem posed a real issue. What she thought was her period would go on for months at a time, only breaking for a week before continuing. Explaining her experiences to a friend would be what ultimately led her to, for the first time, the term ‘Polycystic Ovarian Syndrome’. Research of the hormonal syndrome brought her, curious, to her doctor.
“After I went to the doctor, I did an ultrasound. That’s when the doctor showed me the polycystic ovaries. He actually did two ultrasounds because he wanted to make sure that he was diagnosing me with Polycystic Ovarian Syndrome.”
Jhaneil laments the fact that she did not know about PCOS before her diagnosis in January of this year. The friend that had introduced her to the possibility of being affected by the syndrome she would later learn suffers from it as well. A budding content creator, Jhaneil sought community and attempted to combat ignorance around PCOS through her YouTube and TikTok platforms. It was then that she found fellowship with other women who shared her disorder.
“I started meeting other persons with PCOS through a YouTube video I made. Somebody reached out to me to be a part of her podcast [discussing PCOS] and I ended up meeting like three or four other people who had PCOS as well. I also made some TikTok videos about PCOS discussing what it is, the treatment that comes with it… In the comments, there were people expressing that they too have this issue and they have the same treatments.”
Though Smith’s experience getting diagnosed and starting the path of treatment happened without much issue, she speaks on the indifference doctors can display to their patients experiencing symptoms of PCOS and dealing with the reality of being diagnosed with a life-altering autoimmune condition.
“I feel like it was kind of brushed under the rug and when I talk to other persons they say they experienced the same thing. Doctors will tell you ‘Alright just take some birth control’ and that’s it but they don’t talk about or assist you with the other things that come with PCOS.”
She is referring to the conditions PCOS patients can experience such as depression, iron deficiency from the steady loss of blood, obesity and diabetes. A person suffering from hormonal syndrome can develop any one of the aforementioned conditions at any time before or after their diagnosis.
“Most of those things aren’t catered to. [It’s like] they just throw two birth control on you and call it a day. The birth control also helps with the weight gain aspect of it but in my experience being on it, it’s like your entire body changes.”
The conversation surrounding PCOS, Jhaneil notes, is limited despite how common the disorder is. Women are constantly being diagnosed by doctors but are treated flippantly using standardized methods irrespective of the different ways in which the disorder affect their bodies. She recounts being left to do most of the research herself. The scarcity of information and absence of persons to discuss her new diagnosis with is what led her to create social media content around PCOS to her over 9000 followers on TikTok and over 400 subscribers on YouTube.
“When I was diagnosed I didn’t know anyone else who was experiencing this. When I went on TikTok and typed in PCOS in the search bar, everybody who came up was from a foreign country. I saw no Jamaicans. I have a YouTube channel and a TikTok so I decided I’m going to use those platforms to find the persons who were experiencing PCOS and also share my experiences and some treatments I’ve received just so I can help [my followers]. That’s what pushed me to start creating content.”
Smith is especially serious in her desire to continue the conversation around the syndrome now that it affects her lifestyle. The symptoms she has experienced stemming from both the PCOS and the birth control she was put on to combat it. She outlines how the autoimmune condition has impacted her life.
“I knew my body was changing, but I didn’t know what was changing my body. Even before I [was diagnosed] I started to experience body shame…Persons would see me and publicly express that I’ve gained weight and that I ‘look like a cow’. I knew I gained a lot of weight. Persons around me were noticing that and constantly commenting on it. So things like that I feel like I was going down a road of depression.”
She speaks more on the more controversial changes to her body she’s been experiencing. More importantly, why she embraces rather than try to hide them.
“I started to grow more facial hair and you know a female with facial hair is not something that is highly accepted in our Jamaican society. So me having facial hair has always been like ‘Yuh nah cut it? You look like a man’. While I can cut my facial hair, I decide not to because I don’t feel like my beard or my moustache takes away from my femininity. It’s a symbol to me because people are gonna ask [about it] and I can educate them about PCOS.”
Additional issues were posed to Jhaneil in the form of back complications caused by her sudden weight gain. Compounded with her existing risk of diabetes from the lifestyle disease being hereditary made higher because of its link to PCOS, now more than ever was she forced to make more calculated decisions as to what went into her body.
Despite the loneliness and depression accompanying her PCOS and its symptoms, Smith became determined to become an advocate for her new community. She talks about her search for support groups and foundations she can join to further educate Jamaica’s population on an issue affecting more women than people would think.
Though a long way from remission of PCOS Jhaneil remains hopeful that she’ll eventually be able to lead a normal life.
