I have Polycystic Ovary Syndrome (PCOS). I was undiagnosed until I was almost 28 years old, mostly because when I would go to doctors and ask about things that I later learned were symptoms and fairly common markers of PCOS, I was brushed off and essentially treated as if I didn’t know my body as well as I thought I did.
A quick biology lesson: When a woman’s ovaries are preparing to send a little egg forth into the world of her fallopian tubes and uterus, a cyst forms, from which the egg is eventually released. In a woman with PCOS, the ovaries get all excited, forming multiple cysts and then, often, getting so confused that they don’t send any of those little eggs out into the broader world of potential baby-growing. And what that means is that the woman’s hormone balance is thrown off, because there’s no ovulation to signal the ladyparts that it’s time to shift to laying off the production of some hormones and upping the production of others. And that can lead to all kinds of mayhem, depending on the specifics. In my case, there’s virtually none of one of the lady-hormones (I can never remember whether it’s progesterone or estrogen I’m low on) and a bit too much of the dude-hormone testerone, hence the acne that persisted until my doc put me on an appropriate birth control and the more serious Italian-lady ‘stache than my sister’s which, unfortunately, is irreversible. So, I thank god – or more, accurately, the manufacturers of Nad’s brand products for lady facial hair removal – for wax strips. But I digress. Other things, such as terrible irregular periods and a persistent weight problem and never feeling quite right, things I’d tried to talk to doctors about for years, only to have them tell me that I didn’t know my body as well as I thought I did, they were part of it, too.
The thing I can’t fix with medicine or cosmetics is that, like many women with PCOS, my particular hormone cocktail has seriously effed up my metabolism, which is why I stayed overweight even when I was working out for an hour or more, 5-6 days a week, and eating a low-fat diet. Frequently, women with PCOS have insulin resistance, sort of similar to diabetics, but with less-immediate catastrophic effects. I’m not going to go into shock if my sugar level spikes or drops too low, and I’m not likely to need to have limbs amputated or to go blind if I overindulge in chocolate too often and don’t take insulin shots. (Although, it’s worth noting that some sources on PCOS say that the insulin resistance can leave women at higher risk for type-2 diabetes.) But, eating too many carbs, especially refined carbs like processed sugars and most grain-based flours, will have an immediate effect on my metabolism, which will affect my weight and my energy. And this is the major challenge for me.
After some crying in my Doctor’s office, and talking to another friend with PCOS, I started reading a bunch of information on nutrition, and how different foods affect our bodies and whatnot. And I went through a sort of trial and error period, where I eliminated a bunch of carb-y foods, and then added some back in and gauged how they affected me, and then cut them back out if there was any negative effect, immediate or delayed. Over about 8 months, I lost about 40 pounds. But, more significantly, I also lost the near-constant exhaustion, and I felt better, physically, than I’d thought would be possible. I should clarify that I never felt sick before, but I’d felt off. As if my body was this thing I was dragging around, trying to get to do things, and it didn’t wanna do them. Now, I could feel that it was working efficiently. I had energy. I was sleeping well, for the most part. I had an easier time concentrating on my work (writing, teaching).
I had two really good years, and then I moved away from the place I’d come to consider home, and relocated to start a PhD program. And that move came with extenuating circumstances which left me in a pretty serious depression that made it harder to remember how to take care of my body. So I started “slipping” – eating things I knew would make me feel not-good, and ignoring the signs my body was giving me that I’d learned to recognize as meaning “please stop.” So, I gained a bit of weight – about 9 pounds, which may not seem like a lot, but, let me tell ya, I’ve had a fuck of a time trying to get it back off post-depression because I was eating not-okay again for so long that my body lost the efficiency it had developed over the two very healthy years. And, I’d lost a lot of the will to eat the way I wanted to, or rather, to resist eating the way I knew would make me feel bad. And also, I’m more tired, and my sleeping is worse, and I can tell that my body and I aren’t running at top efficiency yet, even though I’m eating better now and I’m still exercising regularly.
Another challenge has been my environment. I have a hard time resisting some of the foods that I know make me feel not-good. Foods that are pretty much guaranteed to eff up my system are refined carbs – processed sugars and most grain-based flours, also starchy carbs like rice and potatoes. But here’s the thing – I am Italian and Polish, mostly; I am hard-wired to want to eat pasta and bread and potatoes. It’s the least fair thing about having PCOS, as far as I’m concerned. And, if you’ve ever seen me around chocolate, you know I have a reaction to sugar that is like I imagine crack is for people who use it. I cannot eat these things in moderation. I probably could, if there weren’t other factors affecting my current stress level and will-power, but I can’t do moderation right now. It’s all or nothing. I wish that weren’t the case, but, for now at least, it is.
Recently, a friend who also has PCOS and I were talking about how hard it can be to eat the way our bodies need us to eat when we’re in social situations where people offer us the foods we shouldn’t eat. She said that it was unfortunate that women with PCOS don’t have one of those memes like that “How to Care For Your Introvert” one that’s been going around. Spurred by that conversation, I’ve started a list of tips for people who are friends or family members of a woman with PCOS, based on the situations I have found hardest to navigate.
1. Don’t gift or offer her foods that you wouldn’t give to a diabetic. As a general rule, you can assume that candies, baked goods, and other sweets made with refined sugar are on the “no” or “only in very careful moderation” list for a woman with PCOS. Don’t worry about me feeling left out. If I want one of the treats you’re having, and I know I can “afford” to have it that day, I will ask.
2. If you offer her food and she declines, by all means, do not say, “Are you sure?,” and definitely don’t offer to send some home with her for later. For me, it usually takes all my strength to turn down foods I want to be eating but know will make me feel sick. So, when someone asks a second time, I’m in a more vulnerable position than I was before, and also now I feel guilty because you clearly want me to have that food. And so I’m more likely to take it, and eat it, and then feel bad. Believe me, no one understands the desire to share food with people they care about more than me. I am an Italian grandmother just waiting to happen. I love feeding people; it’s one of the ways I know how to show that I care. But know that when a woman with PCOS turns down proffered food, it does not mean that she is rejecting or isn’t appreciative of your offering of love. It means she’s prioritizing the needs of her body, and you should respect that.
3. Understand that the choices she makes about food are probably based on intimate knowledge of her body’s specific needs, and on what else she’s eaten that day. Relatedly, understand that she may need to turn down short notice dinner invitations, especially to join in on meals at restaurants (or in your home) that are likely to have a heavy carb component. I plan my meals carefully on a daily and weekly basis to make sure that I have plenty of options for foods that are low in the carbs that negatively affect my body so as not to throw off my metabolism and high enough in the ones my body can handle that I won’t be constantly hungry. I also know that things go better for me, generally, if I load most of the carbs I do need into the earlier part of the day, and have a dinner that’s even lower in carbs than my other meals. Sometimes, I indulge in treats, which, if you’ve been my friend and in social situations with me over the past few years, you have seen happen. I realize that may lead people to think “Oh, she can have that thing she says she can’t have after all,” when often, what it means is that I planned for it, very carefully, by budgeting my other carbs throughout the day. It’s sort of akin to budgeting money – if I know there’s a treat coming up, I can choose to “save” for it. Sometimes (too often, in recent years), as I’ve mentioned above, I’ve been in situations where I indulged a bit against my better judgment. That’s more likely to happen in situations like the ones explained in #s 1 and 2, above, which is why those two are so important.
An ex-boyfriend of mine, before making any short-notice suggestions about food, would ask “How’s your budget today? Do you have room for such-and-such?” Questions like that are good in situations where you want to invite your PCOS friend/family member out/over for a meal or offer a treat but also want to be considerate of her nutritional needs. “Can you have X right now?” feels a lot more inclusive and considerate, and also leaves more room for a guilt-free out, than “Let’s go get X for dinner.”
4. Do not say things like “A little bit won’t hurt you” or “You’re so thin anyway, what’s one cupcake?” or “But you need carbs. Where else will you get your energy?” As mentioned above, I and many other women with PCOS have to plan our carb intake very carefully. And, in my case, it took a lot of reading up on nutrition and paying very careful attention to my body to learn how different foods affect me. The simple truth is that oft-cited general nutrition guidelines (like the food pyramid and weight watchers points) don’t actually apply to my body. So, unless you are a nutritionist who specializes in the care of women with PCOS, or my personal gynecologist who is intimately acquainted with the specifics of my condition, I’d prefer that you don’t assume you know how foods will and will not affect my body. (Actually, that’s a pretty good rule for people to follow with anyone, regardless of whether they have PCOS.) Also, because of my long pre-diagnosis history of doctors telling me I was wrong about what I thought I was feeling, I am particularly sensitive to hearing people’s assumptions about how my body works. I find it insulting and condescending.
5. Understand that food affects more than weight, that the choice to eat this way is about wellness, in a holistic sense. While it is true that the reason I originally changed the way I eat was for weight loss, the gains from it in terms of how I felt physically and emotionally went far beyond shedding pounds. Often, when I turn down food and feel compelled to explain why, I say “It will make me feel sick.” And yet sometimes people still try to talk me into it (see #s 2 & 4), which made me realize that maybe when I say “I will feel sick,” people hear “I will have mild indigestion” or “I will feel uncomfortably full” or “I will feel bad about myself because I am obsessed with my weight,” as if it’s just a temporary effect I’m worried about. And, while all those things are partially true, “I will feel sick” also (and mostly) means “My energy level will be off, and I’ll likely have a harder time sleeping over the next few days, and if I do this too many times I’m upping my risk for type-2 diabetes, and knowing that will make me feel guilty.”
6. Understand that she’s walking a thin line of being constantly aware that her body is not ‘normal.’ Part of the reason I give in to indulgences when they are offered to me is that I don’t want to be left out. And that’s a big part of why I’m left vulnerable and frustrated by things like “A little bit won’t hurt you” and “Are you sure? How about just one small slice of cake?” The more I’m pushed to accept food that my body can’t process well, the more I feel I have to defend or explain myself, and the more I’m reminded that my body is not like most other people’s. And that makes me feel pretty isolated, and there’s all that cultural baggage attached to “difference,” which I know better, intellectually, than to take seriously, but which I can’t yet help feeling emotionally.
These are the situations I find most challenging, and things I most need my circle of friends and family to understand. It’s also somewhat dependent on the severity of my condition (which is moderate). Anyone else out there with PCOS want to chime in with other do’s and don’ts?