Last year, I was diagnosed with PCOS. What is PCOS? It’s short for Polycystic Ovary Syndrome. It is a hormonal disorder that affects one in ten women during their childbearing years. Common symptoms of the condition include acne, excessive hair growth, irregular periods, anxiety, and depression.
I will admit, I felt alone at first in this journey because I didn't know anyone else with PCOS. However, once I became comfortable sharing my diagnosis with others, I realized more people had it than I originally thought.
I recently sat down with someone I met through my own PCOS journey (who wishes to remain anonymous) to talk about her experience, struggles, and the advice she would give to those living with PCOS. She also shared a few tips she would give to anyone wanting to support a friend who has the condition.
How were you diagnosed with PCOS?
“I was about 17. It was more, I thought that I started my cycle, but either there would barely be a cycle, which was very little to no spotting, or if I did get one it was extremely heavy. Very, very heavy. So, those were the main symptoms I experienced.”
How did it make you feel when you found out you had PCOS?
“Initially, it wasn’t anything heartbreaking. I didn’t think, ‘oh gosh, I have this’ when I found out. Again, I was 17. But as I got older, in my 20s, I think I started getting more concerned about if I was going to be able to have kids. Also that the symptoms, like the extreme hair growth would occur in more places as I got older.”
Were there any symptoms that became more prominent once you were diagnosed?
“Yes. It was more of the hair growth. Now, I’ve always had hair on my legs, but I was starting to notice hair on my chest, and the hair on my legs was very heavy… extreme hair growth on my legs and thighs. And then a little facial hair. It wasn’t heavy, but enough to where I was plucking and tweezing much more than I wanted to in high school.”
How did your friends and family react to the news that you had PCOS?
“They really didn’t react, to be honest. I didn’t tell a lot of people besides my mother. But I don’t think they looked at it as a deadly disease — which it wasn’t. It was just more of a physical thing. But, when I talked to my mother about it and once I explained to her what it was and it wasn’t something that could cause death, she was more supportive.”
Has the condition affected your relationships with others?
“No. It hasn’t. All of my friends that I have told have been supportive. They just want to know more about it because they had never really heard about it. If you don’t have it, you don’t really hear a lot about it. I feel like it was more me not wanting to show or expose myself because I felt that I would be looked at differently. But I’ve had good friends. They have been very supportive.”
What is something you wish your friends knew about your PCOS journey?
“I wish they knew more of the psychological impact it can have. Like the hair growth and what it does with your body can really weigh you down and it can take a lot to be yourself around your friends. It can be mentally draining.”
What are some ways your friends can support you on this journey?
“Learn more about it, so they are more aware of what it is. So, if they are not familiar with something, they look it up and go, ‘oh, okay. That’s what it is’. Also, be mindful of when I am speaking about it, and listen.”
What advice do you have for young girls and women with PCOS?
“Talk to someone, find a support group, and don’t be so hard on yourself.”
As mentioned before, one in ten women suffer from PCOS, and yet, it does not get nearly as much attention as other illnesses. As someone who knows what it is like living with PCOS, I will continue to raise awareness of it to educate those who do not have it and be a voice for those who may not feel comfortable sharing their experience with it.
For me, the best ways my friends have supported me are reaching out to me to see how I am doing and sending me encouraging messages or social media posts to remind me of my purpose.
If you are reading this, and you know someone who has the condition, reach out to them, remind them that they are enough, and take time to do your own research. There are a lot of great resources out there.