Living with PCOS (Polycystic Ovarian Syndrome)

GT: I met Tabia during my AmeriCorps VISTA year. We served in the same cohort and I always admired her. It was wonderful to reconnect after seeing her post a picture of her shaving her face for PCOS Awareness Month in September. I had been wanting to do a blog post on PCOS for a while, but didn’t have anyone to interview yet. Then she popped up! And I couldn’t have chosen anyone better because she not only has learned to live with the disorder… she’s learned to thrive, make meaning out of it, and to help others.

I had been hearing a lot about PCOS from one of my favorite anti-diet and body-positive dietitians, Julie Duffy Dilon, on her Love, Food podcast. I learned that we really have no idea what others’ bodies need or why another person’s body is the way that they are. I also learned that up to 70% of people who have PCOS are undiagnosed and those who are diagnosed make up 1 in 10 women. Those numbers are staggering!

PCOS is a disorder that causes women to have a hormonal imbalance as a result of cysts on their ovaries. The side effects can range from unwanted changes to physical appearance (facial hair, skin discoloration, acne) to cancer, heart disease, and diabetes. 

I wanted to know why we weren’t talking about this. Why didn’t I know about PCOS until this year? Why don’t more people know about it? So, I did some research and I interviewed Tabia who has made peace with her PCOS. Can’t wait for you to “meet” her; she’s amazing!

Tell me about yourself!

My name is Tabia Batts. I was born and raised in North Carolina; I’m a country girl. The city has been quite an experience to get used to. I’ve always been a very artsy soul. I like doing creative stuff and being around creative environments. I’m also always thinking about other people. I’m very aware of social justice and I love working with kids.

I’m a teen director managing 30 kids on the daily at the Boys & Girls Club. If you work with young adults and start teaching them it makes the world a better place. You’re encouraging them to be better people in the world. I like giving. I have a servant’s heart. I love serving people and helping people any way I am.

When were you diagnosed with PCOS?

I wasn’t diagnosed with PCOS until I was 27 or 28. I would go to the doctor and they’d just tell me I have irregular periods, so I should get on birth control. I didn’t want to get on birth control because I didn’t think the side effects were worth it - infertility, cancer, etc. My mom also was very religious and didn’t want me on it because she thought it would make me have sex.

Dealing with PCOS before I was diagnosed though was hard. Most girls get their periods around middle school. I didn’t get mine until I was 16 or 17. The side effects started around this time.

What exactly is PCOS? What are its side effects?

I HATED the side effects of Polycystic Ovarian Syndrome. Some people are below weight, some are above. I have insulin resistance, so my body doesn’t break down carbs and sugar well. As a result, I keep on weight. In the south when you’re a bigger woman, it’s not a big thing. But, in the city, I’ve been more body conscious.

Another side effect is hormonal imbalance. You have more male testosterone in your body than female hormones. All of us are born with both hormones, but when you’re off balance as a result of PCOS, your body produces more testosterone. Many women have hirsutism because of this. They show hair in unwanted places: chest, face, back, and male pattern baldness.

So, I was always self-conscious about that as a woman with a hair on my face. Then, as a black woman I have coarse, thick hair. Having to shave made me feel insecure. I’m dealing with being a bearded lady, overweight, not menstruating, and then add on depression. Depression is another side effect.

Then there can be tumors on the ovaries that can turn into cancers if they’re not watched. I do have tumors, but they’re malignant not cancerous right now, thank God.

What were the emotional side effects of PCOS for you?

Dealing with the emotional effects of it is more stressful than everything else because you have to face the world and no one knows. People on the train are looking at you and you don’t get a chance to explain. I can’t say: “This is why I look like this, I have PCOS.”

I was already dealing with self-esteem issues. So, I didn’t get into positive relationships. I lowered my standards for who I allowed to be in my life because I already felt badly about myself.

Then, I had the fact that there’s a 10% chance I could have kids weighing on me. I had tried to get pregnant on purpose to no avail, but I look back and thank GOD because man, the people I was trying to get pregnant with… no. It would have been bad news. But, I am fearful as I’m getting older that I couldn’t get pregnant. I fear getting into relationships and telling a guy that I’m starting to like that I may not be able to have kids. I mean, in vitro fertilization is an option, but it’s so expensive.

Has your perspective on your PCOS evolved?

I think my point of view now is that I’ve matured and thought about the disorder. We can always look at something as a curse or a blessing. It’s definitely been a blessing for me in hindsight.

I could have gotten pregnant at a young age, but because I didn’t i now have so much love for the kids I work with. They are my kids. I’m able to give on a whole other level than a person who has kids of their own.

I just look at it as a positive thing now whereas before I thought “I’m not a normal woman.” I think society puts these things in your mind about what’s normal and what is abnormal and being a woman with hair on her face wasn’t normal to me at all. But, now i’m just like “ok. ”

This evolution took a lot. One of the most helpful ways I started to gain confidence was by being a part of a community with women who have PCOS - groups on fb, summits in Atlanta, etc. It was so amazing and healing be around people who deal with the same issues.

I’ve gotten to the point that I’ve accepted PCOS. I reject the idea that it’s taboo and something people don’t talk about.

My friend is a photographer, so I asked her to photograph me shaving. I deal with this everyday. I shave everyday. I feel like i’m always hiding and I wear a boatload of makeup. But, eventually I realized that people aren’t looking at me or my face. They’re seeing my soul shine through on the outside.

They leave my presence feeling better than when they stepped into my presence. This is who i am. Whoever really likes me, that’s it. And if they don’t they’re not meant to be in my life anyways.

And yanno i still have bad days especially if i have ingrown hairs, I’m like UGH. But then I think about other people who have different disorders. At the end of the day everyone has their thing they have to deal with. This is mine and I have to make a conscious decision every day to face the world and not be negative about the hand I’ve been dealt.

Even as far as PCOS go, a lot of women have it worse than me. There are some woman that can be found on Youtube who just decide to let it grow out instead of shaving everyday. I couldn’t do that, but I give them mad props for doing it. Kudos!

But, I do get the idea. You come to a point where you’re able to say “my beard is not who I am.”

Could you talk more about how PCOS has affected your body image?

The biggest thing is that “healthy” is not defined the same way for everyone. People say you should just do this… do that.. But they don’t know what your body needs. Sometimes when you’re overweight people just think you’re lazy. I want to say… “Listen, you have no idea what’s going on in my life and what my needs are.”

One time a friend said to me during a game at work while we were running around with kids: “I thought you were going to be lazy because you’re fat.” (we’re really candid with each other). It’s funny to me that people judge a book by it’s cover. I’ve seen plenty of lazy skinny people!

Different things work for different people, but because women with PCOS have unbalanced hormones, we often have unique needs. With my insulin resistance, let’s say I get a salad with salad dressing - it would be better for me to not have the dressing because of the sugar or the hidden carbs. My body has a hard time breaking them down.

Another example is that a lot of people consider fruit healthy, but for me I often can’t eat it because it’s a lot of sugar and my body doesn’t respond well.

I have found a lot of ways to deal with my specific needs and find what works for me. Two people who have PCOS still can’t eat the own diet. It’s an individual thing because it depends on own own needs - some of us have insulin resistance or tumors. I believe in food and herbs that heal the body, too. So others may eat food that heals the tumors.

I love food, being a southern girl. I haven’t had the desire to do it, but I’ve heard of women healing their bodies through raw food. I believe it may be something that can be healed. The number one thing for me was a lot of prayer and meditation in my journey and understanding why this is my thing; why is this something I had to deal with?

Yay! Could you talk more about spirituality and God in your journey? I know religion is important to you.

At first I was so upset with God. I couldn't understand why He'd do this to me. I was depressed upon diagnosis, but also happy at the same time because it was finally clear what my issue was. The night of my diagnosis, I went to bible study at church. The pastor said “A lot of you are dealing with stressful situations, some of you may have learned a difficult thing today.”

He said went on to talk about a woman who came to him three months ago upon being diagnosed with PCOS and being told she was infertile, or couldn’t have kids. He said he prayed and prayed for this woman and told her that God has a plan for her life. He shared that the woman called two days prior to share that she was pregnant. It was natural and her and her husband don’t even know how it happened.

I look in the sky and realized God was having a moment with this pastor.

To me, this whole thing was amazing because for the pastor to say that on the exact day I was diagnosed i was like “Okay, God… you’re with me. You didn’t leave me alone. I feel your presence.”

It was a lot of hope for me. You know what, no doctor or person really has control over what’s going to happen. If i’m supposed to have a child i will. If i’m supposed to adopt 5 children, it’ll be beautiful. I asked God why he would give me a passion for children when I can’t even have them?

I had to really take the time to seek God and work through the “why me” question. You can have a pity party if you choose to, or you can have true revelation. I came to realize that PCOS gave me a better perspective of who I am in the world. I had to ask God to show me “Ok if this is what I have to deal with, there’s a reason. There absolutely is.” I just had to find out what that reason was.

Now I believe I am called to help other women deal with low-self esteem whether or not they have PCOS because my experience has given me insight that another person might not have.

I’ll have a full life regardless of how this plays out. This is the big thing in life… what do you do with the cards you’ve been dealt? From then on I was just like “Ok. I know this is going to be a process, but i can deal with this." One scripture says “God won’t put more on you than you can bear." God knew I could bear this.

I walked away from ministry because sometimes I feel like the church misses the point, but I still love God and know He’s opening doors… like talking to you now.  

What message do you have for women who may be recently diagnosed?

I would definitely tell them to be a part of a community of other women who have PCOS. Also research for themselves and let them know there is hope. PCOS is not a death sentence. It will be difficult to deal with it, but as long as you have a support system around you it makes a world of a difference.

When I started realizing other people have flaws, I stopped feeling so alone. Know that so many women have it and all people have their own issue they deal with. Just know you’re not alone and there are certain ways to deal with things you’re struggling with. Don’t give up on yourself, i understand it’s very easy to do that, but you’re worth healing.

What can people do to help spread awareness about PCOS?

Whatever your platform is right now… like writing this post or sharing it. The month of September was National PCOS month and there are a lot of organizations out there that are trying to put the word out.

Why do you think PCOS isn’t widely known about?

Because it’s a hormonal imbalance, people aren’t so concerned about it like they are cancer, autism, etc. It also only affects women and it’s dealing with ovaries, so women only really talk about it with their obgyns. Since it’s so common, it unfortunately goes under the radar.

Also it’s been so taboo, a lot of women have been afraid to talk about it. I think it’d be so awesome for women to just open up about it. Getting the word out there is key, so other women can get diagnosed, too, because some women are living with the symptoms and not knowing at all. You don’t have to be ashamed.