I was 15 when my mother took me to the hospital because she was worried about me. Within a few months, I was diagnosed with Polycystic Ovary Syndrome, or PCOS for short. I was 15, barely a freshman in high school, when my life changed completely. Living with PCOS for the past five years, I’ve learned a lot not only about myself, but about my own disease and about living with chronic illness.
1. Life changes.
After weeks of getting blood work done, being referred to different specialists, invasive exams, an ultrasound and more, I was finally given a definitive diagnosis. As the doctor explained to me what it all meant, I felt like the floor was ripped right from under me. I was 15, being expected to understand massive amounts of medical jargon. It was confusing, and even after I left her office I didn’t fully understand what was wrong with me. But still, knowing there was a name, knowing that I wasn’t the only person going through what I was going through, was a relief.
2. And in many ways, it stays the same.
Having a name for what was wrong didn’t exactly fix that something was wrong with me. A diagnosis wasn’t a cure, just an explanation. Some days, it was a relief to know what I had, but some days it was just another burden on me. Before the diagnosis, I could pretend that my symptoms were all my fault, and that I could control them eventually. After the diagnosis, it just meant I was stuck with them, probably for the rest of my life.
3. You’re expected to become an expert on your disease.
When I left my doctor’s office, I left only with a single piece of paper that listed symptoms that I knew all too well, and statistics, and that was about it. Then, when I got home, I did what we’re never supposed to do — I Googled it. Being diagnosed gave me a name to put into the search bar, so it was a little bit better than just Googling symptoms and finding out I could have either a cold or stage IV prostate cancer, like what usually happens, but I still wasn’t exactly sure what I was looking for. Over the past five years since my diagnosis, websites like pcosfoundation.org, Web MD, Mayo Clinic, and more have been my best friends in figuring out what the heck is wrong with my body. What my doctor never told me is that depression and anxiety, both things I’ve had to deal with for the past five years, are often found in connection with PCOS. Also, I discovered that I’m three times more likely to develop endometrial cancer, and according to small studies, could be three to four times more likely to develop breast cancer, and two times more likely to develop ovarian cancer.
4. People won’t understand, or will think they know best.
If I had a dollar for every time someone told me all I needed to do was go to the gym or eat more fruit, I’d have enough money to find a cure for PCOS. My body is literally working against me; no matter how much good I try to do for it, it finds a way to fight me. I don’t menstruate about 80% of the time, and when girls find out, the usual reaction is jealousy - “oh my god! I wish I only got my period every couple months!” or “be grateful you don’t have to deal with cramps!” as if I asked for my body to produce massive amounts of the wrong hormones. What they don’t get is that in exchange for not getting my period the majority of the time, it’s very likely I will never get to have my own children. How is that lucky? Not to mention, because of PCOS, everyday I have to shave my face or be known as the girl with the beard; my hair is constantly full of dandruff regardless of how often I wash it; and the few times a year I actually do menstruate, it’s the most painful, debilitating, awful experience that, if I’m lucky, might even last for two weeks. Oh, and it’s called “polycystic” ovary syndrome, because my ovaries are filled with strings of fluid-filled sacs, which can explode. My body is just that — my body; keep your advice to yourself because chances are, I've heard it a thousand times and it doesn't work for my body.
5. Meeting someone with your condition is amazing.
PCOS affects 5-10% of women 18-44. In the five years since my diagnosis, the first time I met another woman with PCOS was about a week ago. Getting the name for what I had gave me comfort that it was real, but meeting someone in real life gave me so much more than that. For the first time, I got to have a real, honest conversation with someone who knew what I was going through. Even though we had different symptoms, it made me so glad to hear about her experiences in comparison to mine. I got to talk to someone who actually understood, not just sympathized with me. It was the first time I felt like I wasn’t completely alone, and knowing she not only went to my same school, but was also in my own sorority was the biggest surprise I could have gotten.
6. You struggle with how much you tell people.
Some days, I’m an open book and I’ll offhandedly mention shaving my face that day, or acknowledge having dandruff; other days, I hide my PCOS like an affair. I’m never sure how much I should tell acquaintances, for fear of giving them too much personal information. I constantly go back and forth because while it’s such a huge part of my life, I never want to burden someone with my disease or make the mood heavy in a conversation. It’s a constant battle.
7. Sometimes your disease wins.
There are days I don’t want to get out of bed. There are days I want to say “f--- gender roles” and let the hair on my face grow natural and be unafraid of what strangers would think. There are days when all I want is to be normal, to not have to worry about infertility at 20 years old, when I don’t even have a significant other to even think about kids with; to not have to remember to take my pills, or schedule doctor visits. There are days when my anxiety flares up, and I can’t explain why I don’t want to talk to strangers or deal with people I hardly know. There are so many days when my PCOS wins… but there are also days when I win.
Living with any type of disease, chronic illness, or condition can be one of the hardest things a person can face in their lifetime. You get up every day and face it, and some days are worse than others. It can be physically and emotionally draining, especially when it feels like no one around you understands; but knowing there are people out there that can understand what you are going through and help you can be one of the best feelings in the world.
