10 Things to Know About PCOS to Avoid Making Unintentionally Hurtful Comments

My story of coping with polycystic ovary syndrome (PCOS) has many similar chapters to the thousands of others’ I have read. Chapter One: PCOS was diagnosed because, for one reason or another, my body was not working the way a woman of my age’s body is intended to work. Chapter Two: Upon diagnosis, I felt enlightened and in the dark all at the same time. I was suddenly made aware of and self-conscious about many things I hadn’t noticed about myself. I had answers for a great many unexplained or misdiagnosed conditions which were actually side effects of PCOS.

Yet, all I could do was question why this happened to me and how I could make it go away. I asked many questions to specialists and general practitioners alike and found that although most knew of the condition, they could not answer many of my questions because not enough research has been done on PCOS. The general consensus was that weight loss is the key and I was told several times I needed to “try harder.” I felt guilty and shamed as if I had done something to cause this to myself.

I went through months, if not years, feeling depressed each time I ate, regardless of the portion or content, almost crying when I looked in the mirror or stepped on a scale, avoiding going out because trying to find something I felt good in was nearly impossible, all because “this was my fault.” I have dealt with depression, anxiety, acne, hirsutism, abdominal distention, obesity, skin tags, cysts, sleep apnea, abnormal menstrual cycles, and anovulation and infertility. I have hoped and prayed, tracked and tested, and held my legs up over my head. I have had more trans-vaginal ultrasounds than I care to think about. I have gone through all five stages of grief, feeling as if PCOS has taken a part of my life from me.

In addition to the physical and mental tolls mentioned above, additional mental anguishes unintentionally caused by those held dearest can become very depressing and discouraging. I would like friends and family, who want nothing more than my happiness, to know that as wonderful as your intensions are, here are 10 things about my experiences with PCOS that may help avoid the unnecessary anguish.

1. PCOS is an endocrine disorder. In its simplest description, it affects every part of the female body that is regulated by hormones in one way or another. (Simple biology lesson: that is everything from the brain to the bowel and beyond.) This is not something that just happens, nor is it something that will just go away. This is a lifelong struggle. The cause of PCOS is not known, and until further research is conducted, a potential “cure” does not exist.

2. Please don’t take my attitude personally. I can easily be triggered by a random thought that sets my mood from happy to sad or angry, and it has nothing to do with anyone, just my brain chemistry. I’m sorry if I snap at you!

3. No, I do not want to be overweight. Yes, I am trying to lose weight. Please don’t be so quick to judge me. I am a lot more than the number on that scale. While weight loss is a priority to remedy many PCOS symptoms, it’s not as simple as going to the gym more and eating less, like it is for those with balanced hormones. Hormonal imbalances are continuously fighting against shedding even a single pound. One pound kept off is an amazing accomplishment for me.

4. Thanks for asking if I have lost weight, but the truth is, if I haven’t it’s actually hurtful when you ask, so please don’t try to compliment in that way. Simply tell me I look great today and let me tell you if it is because I have lost weight.

5. Please know that asking about kids is not as innocent as you may think. This can be sore subject, especially when you don’t know if we have experienced loss. Yes, we planned on having kids. Yes, I want to have kids. No, I do not know when we are having kids. This is out of my control, no matter how “planned-out” I had it in my head after marriage.

6. Odds are if I want kids, I have already seen specialists, tried fertility drugs, tried that position, tried tracking ovulation, and put it in God’s hands. Thanks for checking, but please know that we have done our homework.

7. No matter how religious I am, please stop telling me to pray about it. Pray for me; you don’t know how many countless hours I have spent feeling like I am not worthy of an answer to my relentless prayers.

8. I have tried the recommended supplements and medications, both prescription and over the counter. I have followed the diabetic diet, the paleo diet, and process-free diets. I have gotten up and driven to the gym at 5 a.m. five days a week. I am trying! What works for you may not work for me.

9. I love that you want to comfort me and cheer me up by making my favorite food, but please don’t be offended when I do not eat it. I am struggling with a potentially serious health issue that is significantly affected by my lifestyle habits. Please do not guilt me into eating things. Comfort food is not a solution or a reward.  

10. Lastly, I have spent countless hours researching PCOS and found support groups with so many women just as confused and frustrated as I am. I found comfort in their stories and the similarity to mine. Please feel free to do your own research to find out more and read their stories.