September is PCOS (Polycystic Ovarian Syndrome) Awareness Month. I heard someone say recently that they feel like there is an “awareness” day, week, or month for everything these days and it feels like we’re in this vortex of over-saturation of “awareness”. This made me cringe.

I mean, I get it. But here’s the thing: there is still a major deficit of awareness of so many things. If we keep quiet and don’t speak up, we can’t expect people to understand what we’re going through. It leaves us feeling isolated, alone, and left behind while other ailments receive attention from the medical community.

PCOS is extremely misunderstood, even by doctors, and that’s an understatement. Prime example: when I first began developing symptoms of PCOS 10 years ago, the first doctor I saw told me that I couldn’t possibly have it because I wasn’t overweight enough, and dismissed my request for further testing. Guess what? I did have it. The weight gain just came later. And finding a new doctor (the same one I see today) ended up being the best decision I’ve ever made. PCOS is often one of the most commonly misdiagnosed endocrine disorders that impact women, and it goes beyond infertility.

Related: Infertility: A Decade of Waiting, Miracles, Loss, And Hope

Beyond the blatant misunderstanding of what PCOS is and who it impacts, this is why PCOS awareness is so important:

  1. 1 in 10 women struggles with PCOS. This number seems to fluctuate between 1-8 and 1-10, but neither are favorable.
  2. PCOS comes with a list of at least 32 possible symptoms that vary in intensity.
  3. Fill a room with women who have PCOS and you’ll find different combinations of symptoms – no two are the same.
  4. There is no cure for PCOS – there are only options for managing symptoms, and what works for one woman may not for the next.
  5. As soon as a woman with PCOS finds a way to manage existing symptoms, new symptoms flare up, forcing us to have to shift everything about our treatments, diets, supplements, vitamins, etc.
  6. Women with PCOS have a higher risk of developing heart disease, diabetes, and certain types of cancer.
  7. There is research suggesting that PCOS should be classified as an autoimmune disease. Furthermore, there is medical proof that certain autoimmune diseases are often linked to PCOS.

PCOS has hurt me in a lot of ways. It has robbed me of my ability to conceive, given me 18 of the 32 possible symptoms, caused immense abdominal pain when I’ve least expected it, impacted my weight management and overall health, caused a huge rift in how I see myself as a woman and has left a permanent scar on my heart and soul. PCOS awareness is so incredibly important because it’s something many women battle every day in varying ways. We have no cure. Statistics are not in our favor. We have tried everything suggested to manage our symptoms. We’ve been preyed upon by countless companies who claim they can help us get pregnant. We’ve been through the ringer. We’re misunderstood. We often feel isolated and alone.

Related: When your heart says yes, but your body says no

And yet we have the best community of supporters. Meet any woman with PCOS and she will hug you while she says “me, too” through her tears. Post about it on Instagram and they will flock to you so that you know you’re not alone. PCOS has taken so much from me but has also given me the greatest friends and community a girl could ask for. PCOS awareness has connected me to so many women I wouldn’t know otherwise. As difficult as this syndrome is to live with at times, it does not define who I am. I’m broken at times and I grieve my infertility and miscarriage, but I’m more than that.

I have PCOS, but PCOS does not have me.

I am still standing.