I am doing it so no one will have to go through it alone
Fareedah Afolabi
PCOS is a major health topic around the world, yet it remains significantly under-researched. Many women visit their doctors only to be prescribed medications and put on birth control that does not work for them, or simply told to “go get pregnant”. It sounds harsh and almost unbelievable but this is the reality of many women.
Even on social media, women living with this condition are often ridiculed, mistreated, or shunned when they share their experiences. Most times by people who don’t even understand basic anatomy. Having PCOS is not shameful, and no one should ever feel inferior because of it. Rather, what’s needed is more and constant education, having a strong community of support for people living with the condition, and consistently advocating for better research to find a cure or improved treatment options for those living with the condition.
In this issue of Her Voice, I sat down for an interview with Faree. Fareedah Afolabi is an SEO Writer, content creator, brand & music PR specialist, and influencer. She is the CEO of Fab Writes, where she and her team provide professional writing services to help people land their dream jobs and gain admission into universities around the world. She also co-owns a modeling agency, Scarlet Models, with her friend.
Fareedah is the founder of Cysters, a community of over 500 women living with PCOS, where they can openly share their symptoms without the fear of being dismissed. In our conversation, she talks about her experiences as a woman living with PCOS who has created a community for others living with the condition.
Boluwatife: What is PCOS? Like, from your in-depth perspective.
Faree: First off, PCOS is a condition that right now is still described with a lot of jargon that makes it hard for anyone to understand. However, from my own perspective, PCOS is a hormonal imbalance that affects women’s reproductive organs, particularly the ovaries.
Everyone has both testosterone and estrogen. Estrogen is the dominant hormone in a woman’s body while testosterone, though present, exists at a lower level. In women with PCOS, testosterone levels are higher due to the hormonal imbalance.
It has many symptoms, including but not limited to bleeding irregularities, which range from not having a period at all for months, to bleeding twice a month in one cycle, or bleeding non-stop for long periods.
PCOS also affects sleeping and eating habits. It impacts how we look as we are more prone to a lot of skin conditions and excess hair growth on the face and body.
How we feel is also affected due to the hormonal imbalance so there is a high chance of experiencing depression, anxiety, and mood swings.
Women living with PCOS are also more likely to have high cholesterol, diabetes, weight gain, and fat storage around the thighs, neck, back, stomach, etc. It’s also sometimes associated with fertility issues.
It is very important to understand that PCOS symptoms are not one-size-fits-all.
Boluwatife: What do others perceive PCOS to be?
Faree: Generally, people don’t know what it is. You tell someone “Oh I have PCOS” and they are actually clueless. Those who have heard of it often through incomplete or misinformed research tend to have misconceptions around it and draw extremes like “women with PCOS are barren,” “Women with PCOS have a defect,” “PCOS is caused because women of nowadays are eating shawarma,” or “PCOS is caused by skincare products.”
But honestly, 80% of the time people don’t know about it. Which is alarming because a large number of women (6-13%) have it, and 70% of these women remain undiagnosed. And many people – mostly men – ridicule women with PCOS with words like, “Our mothers did not have PCOS,” which is untrue. PCOS has been around since time immemorial; women just didn’t know what it was. It has even come to my attention that female animals of other species can have PCOS.
Boluwatife: How has your journey been from pre-diagnosis to getting diagnosed and now?
Faree: Well, I saw my period for the first time when I was 8, and I bled for over a month. It was really scary andI did not understand what was happening. My family was in a frenzy too because they did not understand what was happening either. While looking for solutions, they tried local remedies first, then local nurses, and when that didn’t work, we eventually decided to go to the hospital.
But when we got there, we were dismissed and not really taken seriously. One doctor said it might be because I started early and that is why there were abnormalities. When it continued, I went back, and they then prescribed contraceptive injections to stop it, which caused a lot of side effects.
When I was 9, the health attendant told me I might have to get married early and have children early because of the bleeding and even went as far as telling me that there is a possibility that I might never be able to get pregnant. Imagine hearing that at 9. It was not an encouraging or particularly appropriate thing for a 9-year-old . The birth control pills left so many marks on my arm when I was younger and caused so many negative side effects that I had to go off them.
As I got older, I decided to do my own research, and when I initially came across the word PCOS attached to the symptoms I was facing, I was scared, but I decided to push on. This was around 2021/2022. I finally decided to go back to a hospital, and this time the doctor actually listened to me, did some checks, and said that I might have PCOS but that more tests would have to be done. That was the first time I actually felt heard and understood. After further tests, it was confirmed that I did have PCOS.
Since then, I’ve been more aware. I constantly research and experiment to find out what works for me.
Boluwatife: What made you decide to start helping others?
Faree: I really just wanted to raise awareness and let others know they are not alone. It started with raising awareness and posting on social media to creating a community so people living with the condition can relate with themselves. Because it’s only a person living with the condition that can understand another person going through the same.
So I did it:
- For my younger self, who was so confused and scared
- For the girls and women like myself that did not have a normal childhood because of PCOS
- So no one will have to go through it alone
Boluwatife: On your journey of advocacy, how do you feel about the backlash you received along the way and how do you deal with it?
Faree: There’s no one that will not feel a certain way after receiving backlash. It never feels good. Most of the time, it comes from men; other times from medical professionals. But I remind myself that I am not doing it for them. As long as they have heard about it, that is one more person educated which is a win. And backlash will not stop me from achieving my goals.
Boluwatife: Any final thoughts you’d like to share?
Faree: Yes. I want more people to learn about PCOS, the same way we Google words, dates, or birthday messages for our moms. We should also pick up the phone and take the time to learn about this condition. It’s important to keep ourselves educated about PCOS because even if it does not affect you directly, it affects someone else or someone you know, and instead of judging them, we should be educated enough to support them. Also, I really hope there’s more research put into PCOS, so in any way you can help, please do.
Thank you.