I am not my sickness: Struggling with Polycystic Ovary syndrome (PCOS).
Just before I dive in, here’s a very important disclaimer (especially for women with PCOS): This write-up is based solely on the experience of the writer, it’ll be ridiculous to apply any part of this to your life. Speak to a doctor PLEASE.
The word is “Exhausted”
That’s how I feel dealing with this Godforsaken illness. The best part? There’s no cure. Isn’t that just beautiful? Finally! Something that would never leave me (direct shade to all my exes).
I got my diagnosis officially in 2021, but I’d always known that there was something wrong with me. Finally getting the diagnosis was just proof that I wasn’t crazy.
I would have loved to talk about my ordeals in trying to get this diagnosis, but I’m tired and all I can say is God bless Nigeria, and may Nigeria never happen to you. To be fair, a lot of women around the world go through so much before getting a diagnosis, but Nigeria fit make person craze.
PCOS is so funny. I mean, you could be in a room filled with women who have it, and they are all experiencing different symptoms. It’s like words and opposites. Woman A hasn’t seen her period in six months, while Woman B has been bleeding all year long. Woman A has Acne, while woman B has hyperpigmentation. Woman A is fat, Woman B is slim. Look, it’s hard to keep up.
One thing that would be peculiar to these women though, is the draining effect that this illness has on them.
WHAT PCOS LOOKS LIKE FOR ME
HIRSUTISM
According to reproductivefacts.org, Hirsutism is the excessive growth of facial or body hair in women. Polycystic ovary syndrome (PCOS), in which the ovaries produce excessive amounts of androgens, is the most common cause of hirsutism and may affect up to 10% of women.
In my case, it’s hard to tell if it’s PCOS, genes, or both. I remember being in secondary school and my classmates (mostly boys) would make fun of my sideburns. They would say awful things like “You’re a girl in a man’s body”, and “better go and shave”. The ones who couldn’t wait for puberty to hit them would tease me saying “Come and give me small now”. All of these will go on to affect my self-esteem.
I am hairy from head to toe (literally). If a man grew hair the way I did, it wouldn’t be a problem (at least to society). I am almost always shaving or thinking about when next I’ll have to shave. I wore long socks in secondary school, not because I wanted to look cute like the school girls in K-dramas, but because it was embarrassing to have that much hair as a girl.
Not gonna lie, I did think the hair was cute until I got my first bad comment about it. It got to a point where I just got tired of shaving. “Let them talk” I’d say to myself. I only shave the hair on my face, breasts, and chest. I trim my pubic area and then go on to say the Lord’s Prayer. I haven’t touched the hair on my legs or my back in a very long time, and I haven’t died. Don’t even get me started on the hair that grows on, and inside my bum bum (dear sky Daddy, this is very unnecessary… don’t you think?).
I honestly do not like the hair, but what’s the point in shaving when the hair will be back the following week? There are substitutes like waxing, but have you seen the prices? “La la la la la la la li, I say let it grow” (you can only get the joke if you’ve watched The Lorax).
The stereotypes that come with being hairy can be so annoying. Some people will assume that you’re wicked because of the hair on your face. The assumption usually follows with the question “You be Igbo ba?” Or “Are you Igbo?” Nigerians can be somehow, to be honest.
OBESITY
Overweight and obesity are defined as abnormal or excessive fat accumulation that presents a health risk. A body mass index (BMI) over 25 is considered overweight, and over 30 is obese. -W.H.O
Being that there is no cure for PCOS, and it can only be managed through lifestyle changes, I had to work with a dietitian almost immediately after I got diagnosed. I got on the scale in the dietitian’s office, and she looked at me and said, “Your BMI is high, it’s showing that you’re obese”. She would go ahead to put me on something close to a juice fast. She made me understand that carbs were my enemy and that I must run as far as my legs could carry me away from them. She gave me a deadline of 2 months to get to a stable weight.
I almost died.
A trip to every doctor’s office would almost end or end in tears. Everything was always linked to my weight. Not sleeping well? Lose weight. Severe cramps? Lose weight. Back pain? Lose weight. Omo! I almost didn’t see the need to go to the hospital because I could swear that they’d tell me to lose weight. Like losing weight will make the PCOS go away, clowns! PCOS is the reason I’m adding the unexplained weight in the first place but yeah, I’m just a patient so, what could I possibly know?
I met another dietitian (askddietitian) who finally helped me. My consultation with her was wonderful. It was the first time I felt seen. She made me understand that I couldn’t lose fat gained over ten years in just ten days. I never fail to mention her when talking about my PCOS story. She’s one of the very few that knows her onions.
You see, society is aware of how gullible women can be when desperate, so, it has learnt to capitalize on that. What tea haven’t I drank to lose weight? I only ended up purging for days after taking them. What waist trainers haven’t I worn? Wearing that thing is the perfect description of having life sucked out of you. I do not recommend any of these things. Exercise and keeping a healthy diet will do the job for you. By “healthy diet”, I do not mean eating grass lol. Carbs aren’t your enemy but don’t take my word for it, take a good dietitian’s. Just see a doctor and stop taking advice from the internet, including this write-up, okay? Good.
With the constant body shaming, I should probably get a T-shirt that says “Na fat I fat, I no kill pesin”.
DEPRESSION AND ANXIETY
According to Healthline, Women with polycystic ovary syndrome (PCOS) are more likely to experience anxiety and depression. Studies say that anywhere from 27 per cent to around 50 per cent of women with PCOS report being depressed, compared to around 19 per cent of women without PCOS.
PCOS can be very depressing if not managed properly. I’m constantly dealing with unexplained emotions that make me feel like I’m too much to handle. There’s a constant battle in my mind. It’s like everything that happens to me can somehow be traced to the fact that I have PCOS, and this scares me.
I find myself thinking a lot about death because of the numerous health risks associated with having this illness. Also, for someone whose parents suffer their own separate health issues, I’m at high risk because of genes. Two separate battles. Imagine wrestling with these, and still wrestling against principalities and powers as a Christian. Dangerous! Well, if God be for me, who can be against me?
Around the same time that I got my PCOS diagnosis, I was also diagnosed with moderate depression and severe anxiety. I saw a clinical psychologist for a while, then I stopped attending sessions. The sessions felt more like a lecture on cognitive behaviours than therapy. It wasn’t giving what it was supposed to give or maybe I wasn’t ready to face my demons. I just needed sleeping pills for my insomnia, why did I have to talk to someone about the world in my head?
Before then, I had spoken to different online therapists. I can’t say that I found what I was looking for, or that I have properly healed from all that I’ve been through but, like Titilope Sonuga said in one of her Poems, “Healing is a constant rocking back and forth. Forgive yourself the backward motion, give thanks for the courage to inch forward anyway”.
There are a couple of other symptoms that I struggle with such as hyperpigmentation, insulin resistance, elevated blood pressure, insomnia, etc. Like I said, PCOS is very funny, but Nigerian doctors are even funnier.
How can I see two different gynaecologists for the same problem and get an entirely different diagnosis? Are you playing with my life? The side effects of the drugs they gave to me were the symptoms I was already dealing with on a daily. Drugs that would add to my weight gain (na that one dey pain me pass), only for these same doctors to tell me to lose weight on my next appointment. The clownery.
“Come back when you’re ready to have children” is a famous line for women who struggle with PCOS. Having a doctor who is meant to know better dismiss your pain can almost make you run mad. Am I supposed to endure all of this until I’m ready to give birth? Bold of you to even assume that I would want kids in my condition. The only thing I’m thinking of right now is me. Yes, Kids are cute (very subjective thinking), but I definitely would need to be alive to have them yeah? So, please focus on me and me alone. At least for now. Being a woman is not limited to being a baby-making machine okay?
Licenses need to be seized in Nigeria for the way some of these doctors treat women with PCOS.
Is it Nigerians and their bad mouth? Lol. I think I’m finally getting used to the pain that comes with body shaming. I have my days of shedding hot tears too because, no one really gets used to pain. No one should even be made to. The kind of people I allow around me is very important. PCOS is hard enough, I don’t need human relationships adding to my stress.
Finding community has helped me a lot. Hearing women talk about this illness reminds me that I’m not alone. We need people to stride in this wicked world. No one is an island.
One thing I’ve struggled with is my identity, and being that it can almost feel like one’s life revolves around having this illness, I was almost tricked by the devil to identify as a “Cyster”. I am not my disease. There is so much more to me than the fact that I have PCOS. I will not allow this sickness to take over my life. I will stride and not strive, I’ll live and not just exist. I’m not my sickness.
Caring for your mental health might require you to unfollow some PCOS accounts on different social media platforms. Community is important YES, but not at the expense of your mental health. Know when to draw the line. Information overload isn’t healthy. PCOS is peculiar to each woman so, speak to your doctor. You might have to kiss many frogs before you find that one doctor, but I know you will. I pray you will.
As someone who has PCOS, the worst thing you can do to yourself is to find a quick fix. I promise you, it’s not the answer. You’ll only waste your time and your money. Why are you looking for a quick fix for something that has no cure? It can only be managed, do not be deceived. Invest in lifestyle change, your future self will thank you.
You are not your Sickness 🤎
Hey Siri, play ‘Woman’ by ‘Simi’ 😪😪
© 2022 by Gloria Ochai
Hi, I’m Gloria. I just want to thank you for taking out time to read. To support what I do here, please click on the clap 👏🏾 icon. You can clap up to 50 times. More claps enhance my visibility on the app and give my work a great chance of reaching a larger audience. You can also follow me so you don’t miss any published pieces. Thank you.
