September is PCOS Awareness Month, and we believe it’s a topic that doesn’t receive enough attention in society. We, at NayLiving, hope to create a safe space for open discussions about PCOS. A whole lot of people including women are unaware of the struggles and needs of PCOS warriors. As of January 2023, Polycystic ovary syndrome (PCOS) is a hormonal condition that affects an estimated 8–13% of reproductive-aged women.
Some of us may shy away from the conversation because it’s simply not the easiest to have but we believe that it’s important that we share as much of our personal experiences with our community as we can. This way, we can help get rid false information and misconceptions about PCOS. Also, we can support each other through this journey.
With that in mind, we had a conversation with a brave friend of ours, who was kind enough to share her PCOS story with us. Here’s how our conversation went:
Thank you so much for taking the time to share your experience with PCOS. Your courage in opening up about your journey is inspiring. We want to create a safe and comfortable space for you to be honest and authentic in your answers. Please feel free to share as much or as little as you’d like. Your insights will be invaluable to others who are facing similar challenges and raising awareness about it.
Please introduce yourself and tell us when you were diagnosed with PCOS. What was that experience like for you?
Hello, my name is Sussan and I’m a 24-year-old creative, living in Nigeria. I got diagnosed in 2023, May 2023 to be precise, when I was 22. My experience? I wasn’t surprised. It was more of a living-in-the-reality experience for me. I had to come to terms with this and make peace with it. My first experience with PCOS was in 2018 when I was 18.
What are some of the biggest challenges you face in your daily life due to PCOS?
There are many challenges but my weight would top the list. Having people in my business because of my weight is somewhat of a big challenge for me. It’s the first thing people see, it’s the first thing people talk about. I have so many stories to tell about how people have treated me due to my weight, after my weight, it’d be hormonal acne, these two go hand in hand. I deal with my self-confidence and charisma—my everyday fights.
We often place a lot of attention on the physical symptoms of PCOS like weight gain, excessive hair growth etc. But how has PCOS affected your mental health and emotional well-being?
Emotionally and mentally? I always try to protect my mental health because of how important it is to me and my career. Also, pay a lot of attention to how I feel and react to good days and bad days. I try my best but these things are very much bigger than me. On most days, I’m a loner, in my world alone, fighting my battles alone. My friends say I ghost them a lot, and my sisters always encourage me to talk to them. My mental health most times is in shambles. Half of the time, I’m emotionally unavailable. This has had a negative impact on my relationships with people and made me selfish. Because, at that point, I’m only thinking about myself. Just me, thinking of how to save myself, so I push people away.
In recent years, there’s been a lot of talk surrounding PCOS, lifestyle and diet as opposed to orthodox medicine. Have you explored alternative therapies or lifestyle changes to manage your PCOS?
Both work for me. After my diagnosis, I was placed on a diet and a whole new lifestyle, everything was going fine until I had a trigger and things became worse than it has ever been, but I wasn’t in the same location where I was diagnosed, so I went to a new hospital and was placed on medication with a little bit of change in lifestyle too. It took time but things went back to track. What I eat and do really matters a lot. Medications work but if I were to choose? I’d subscribe only to my supplements, diet, and lifestyle.
How have your family and friends been supportive of your journey with PCOS? How can we help a loved one who has been diagnosed with PCOS?
First, I was hiding it from my family but PCOS is not something you can hide, my eldest sister found out on her own, and she was the one who encouraged me to get diagnosed. While I was living with her, she was always worried about me, praying for me and making me feel better. She treated me like I was a special need sister 🥹, I pitied her. I weighed 156 kg at 22 years old, was depressed and alone. Even though I was living with such a sweet sister like her, I felt alone. My best friend is the best person in the world. She takes good care of me, My family and friends have been supportive. Last time, I nearly died from bleeding non-stop, I was at my cousins’ and they took care of me and held me on, collectively.
Have you connected with any online or local support groups for people with PCOS?
Only creators.
What coping mechanisms have helped you navigate the challenges of PCOS?
My daily affirmations. I take them seriously. “It’s not my fault and it doesn’t define me.” “I’m stronger than this.” “I will survive this even if I bleed like the woman with the issue of Blood, I will look for Jesus and touch the hem of his garment” This one is the funniest but anytime I say it, I laugh. It works.
What are some of the most common myths about PCOS that you’ve encountered?
I don’t know if this is a myth but I have had someone tell me, I have PCOS because I have done an abortion before and because I am fat.
What role do you think individuals with PCOS can play in advocating for better understanding and awareness?
At the time I knew I had PCOS, at the time I found out, I looked for more women like me but there were only a few. And they were in my age grade, so I thought something was wrong with me. As time went by, more people started talking and I found out it happened to people my age so I figured it wasn’t just a ‘me’ thing. Young and old can have PCOS. PCOS content creators have given more hope, motivation and light over the past year, and they inspire me.
What advice would you give to someone who has just been diagnosed with PCOS?
First, take a deep breath. Let me tell you, you will be fine. Maybe. My advice: Walk more, rest, and eat well. Sleeeeep, ressssttt, walkkkk. Walking, eating, and sleeping well made me healthier than I have been. Please breathe. I honestly, from the depth of my heart, I’m rooting for you. You have my utmost support. It’s not easy—loneliness, sadness, frustration, anxiety, overthinking.
I used to think I wouldn’t be able to give birth, I used to think maybe I did something wrong in my past life or something. I used to cry so much when people called me fat; when people talked about my skin condition. “You spend so much on skincare but your skin doesn’t look good”, “I thought you were 29 or 30.” “Don’t sit on my bed, it will fall.” I used to starve in order to lose weight instead of losing? I added more weight.
My heart used to break into a thousand pieces and I’d cry alone. But walking, eating well and relaxing has saved me. Also, prioritizing things that make me feel better, doing things I love, being vulnerable, and allowing myself to be loved.
We deserve the good things too, we are not different. We are good people who deserve good things. Don’t ever think otherwise.
We, at NayLiving, are extremely grateful to Sussan for sharing her story with us. We hope that it encourages you to learn more about your body and PCOS.
And if you are a PCOS warrior yourself, please know that you are amazing and that we are here for you!
