When the weight is not your fault
I was recently diagnosed with Polycystic Ovary Syndrome (PCOS). It’s an endocrine disorder that primarily affects reproductive hormones, but can also affect other hormones like insulin. It affects about 8-10% of women and has many side effects. For me, my symptoms started with missed periods, adult acne, weight gain and facial hair. Based on these symptoms I would guess that I have had this condition for about 7-8 years but it wasn’t diagnosed until recently–I had an ultrasound to confirm the presence of cysts on my ovaries (they’re there!). I also have abnormal levels of progesterone (low), estrogen (low), testosterone (high) and DHEAS (high).
For many women who have this condition, they struggle with weight gain and difficulty losing weight. I have experienced a steady weight gain of 10-20 lbs a year for several years, with the exception of when I was taking a new drug that caused some weight loss. When I complained to my primary doctor (PCP) at an annual physical, she told me I needed to diet…And trust me, I’ve tried dieting and I have really struggled with it (I don’t diet anymore). What has always frustrated me was that in order to lose weight, I would have to starve myself. Dieting is about starving yourself and let’s just face it–that sucks. A lot of people are willing to starve themselves in the short or long-term in order to achieve a certain body size, but that’s just not me. But I do eat a moderate diet (most of the time). Lots of people have commented on why they think it’s weird that I can’t lose weight because I eat healthily. I know I have a weak spot for sugar, but at the calorie level that I eat it’s kind of ridiculous how quickly I can put on weight. Compare that to my husband–we both eat similar diets and number of calories per day–but he is thin and will likely stay that way for the rest of his life. Our bodies are programmed differently (plus he’s got a few inches on me), but now that I have a diagnosis I’m starting to understand how the playing field is not even.
When I was first diagnosed, I was angry at my PCP for overlooking my symptoms for so long. She’s not the one who diagnosed me, an integrative medicine practitioner that I was going to see to help me with my other health issues (chronic pain and fatigue) did. I remember a few years ago I had read something about PCOS online and when I brought it up to my doctor, she just dismissed it all together. The next time I saw her, she was a little more open to it and said I probably had it but she didn’t try to investigate further or put me on medicine, instead she told me to substitute an apple for a bag of chips and to work out for at least an hour five days per week. Thanks. And the new doctor who did diagnose me looked at my old lab work and saw that my hormone levels have been off for many years and there is no reason for not being diagnosed sooner.
This makes me angry and incredibly sad because 1) I feel like my PCP dismissed me either because she had a weight bias or because she doesn’t agree with self-diagnosis (I have a friend who goes to the same doctor who feels the same way regarding self-diagnoses). 2) My fertility has been at stake this whole time. The sooner you get treated for this the less cysts you build on your ovaries and your eggs stay viable. 3) It could have prevented years of frustration over unexplained weight gain and other weird symptoms. To be clear, I don’t judge people based on their size and I am learning to accept my body where it is, but it is hard to watch your body change right before your eyes while you feel like you have no control, especially when you experience going from a socially acceptable size to a less socially acceptable, less privileged size. I’ve also experienced other health consequences like rising blood pressure. It’s unclear how much weight can be attributed to PCOS alone–as weight gain doesn’t happen in all women with PCOS, but most of them–but it’s possible that I wouldn’t be at the size I am now if I had been treated much earlier.
I am also a bit relieved too–and I know that’s not such an honorable thing (and I’ll explain why)–because I know that there is a reason and a treatment for what I am experiencing. I’ve been struggling with the shame of old friends, colleagues, etc thinking to themselves, “Wow, Andalee has really let herself go.” I have no proof people actually feel that way about how I look, but it is a fear. And I want to shout it from the rooftops: “It’s not my fault! I have a medical condition!” The problematic thing with thinking like that, however, is that it doesn’t matter if it is my fault or not. It’s nobody’s business how anyone got to be the size they are and one type of weight gain is not more valuable than another (even if more socially acceptable). So the fact that I can explain that some or most of my weight is attributable to a medical condition should be irrelevant, but because we live in a society that demonizes laziness and overeating, I feel like I need an excuse to be a fat person. A lot of fact activists have talked a lot about this issue and I won’t hash it all out here, but it is something to consider.
A lot of other people would tell me that I’m using my condition as an excuse to be fat or remain fat and to them, I say “Eff you. It’s nunya business.” I started watching My Big Fat Fabulous Life on TLC featuring Whitney Way Thore–mostly because she’s localish to me and is a dancer, but also she’s up and coming in the body acceptance scene–and she’s got PCOS and talks a lot about the side effects of the illness (warning the show has a weight loss focus). After watching a couple of episodes I stumbled upon some YouTube reviewers who were just lambasting her for using her condition as an excuse for being fat. Even the trainer she hires on the show to help her with her fitness goals says (behind her back), “She didn’t just get that way because of her condition, she also got that way with a fork, a spoon and a knife.” Excuse me while I pick my jaw up off the floor. Again, I say: Nunya business. Another person’s weight/size is nobody else’s problem to solve or judge. It’s unfortunate that we live in a society with so much fat hate and stigma that other people find it appropriate to comment on other people’s bodies.
Anyway, the good news is that I am now on medication that will help regulate my hormones, and after a month of being on it I have already gotten my period, something that hasn’t happened for 5 months! I’ll have a better chance of conceiving when I am ready to start trying and I may lose weight as well. The bad news is that I now have to fire two doctors, not just my PCP, but the integrative medicine doctor because she wanted me to try some crazy weight loss medicines and I’m not going there. I have a doctor’s appointment next week with another possible doctor and hopefully she can start addressing other health issues that other doctor’s have overlooked. Wish me luck on my path to health and wellness!