I Do It with the Lights On Read online

  Not even a month later, right after Thanksgiving, he left his email open on my computer. As I went to close it, the words “love doctor” jumped out at me. First I assumed it was spam, but something told me to open it. I realized that it wasn’t spam and that it was tied to an actual online-dating account. It’s an old one, I reassured myself. He was probably on a dating website while he was single. I clicked to access the account. As I scrolled through, looking at a mostly empty in-box and totally empty sent box, I started to relax, but then I got a rush of adrenaline. His profile photo was one I had taken of him. The kicker? I’d showed it to him and cooed, “This is THE best photo of you ever in existence.”

  I printed out all the evidence and went to pick Eric up from class. I’d planned to wait until we got home to confront him, but he demanded to know what was wrong, so I pulled over and handed him the stapled pages. He said what I figured he would, that he wasn’t on the site to actually talk to people and that he hadn’t communicated with anyone. I told him that what bothered me more was why he needed validation from random women on the Internet. He apologized and cried at the idea of losing me, and I decided to trust Eric and stay with him. Aside from these upsetting instances, he was an affectionate and devoted boyfriend and I fell more deeply in love with him than anyone I’d known before.

  Eric and I talked about getting married, in a that’s far off kind of way, but then one night we were lying in bed and he asked me what I would say if he asked me right then.

  “Are you asking me right now?”

  “I guess I am.”

  Guided by my instinct, which told me that finding a man I loved who wanted to marry me was akin to a miracle, I answered, “I would say yes.” The next day we started looking for a ring. It was all a bit surreal, but I felt no resistance in my heart, and even my friends and family didn’t think we were totally crazy. We found a ring, white gold with a yellow sapphire and microscopic diamonds, for $300 on eBay. When it came to the post office, we went to pick it up and I was overjoyed that it fit, since I’d assumed I would have to have it resized.

  It may not have been a romantic proposal, but Eric had subtle ways of making me feel loved. He always cooked for me, and after every meal he would always ask me, “Did you get enough?” That one little question always made me feel so cared for. One day he made an offhand comment, something like, “You don’t eat that much.” I don’t? I thought, relieved. I weighed 280 pounds. I must have gotten that way because I was an overeating slob, and surely everyone else thought the same thing. To hear Eric say he didn’t think I ate too much was like a pardon from a king.

  I had developed serious neuroses regarding food. Now that I, for once in my life, wasn’t on some kind of formal diet, I had the staggering revelation that I had absolutely no clue how to eat like a normal person. Did normal people really eat three times a day? I always deprived myself of food until I was famished—even if food was available to me when I woke up, I wouldn’t eat it until my stomach ached with hunger. Once, before I’d started dating Eric, I’d starved for almost twenty-four hours when I finally resorted to making a box of macaroni and cheese on the stove. By the time it was done, I was so ravenous that I ate the entire pot standing up while it was still sitting on the burner. A half hour later, I began having chest pains that got so severe I called my parents, who happened to be in town for the weekend, and they took me to the emergency room. The doctor appeared puzzled when he asked me what I’d had to eat that day and I made up something I thought a “normal” person would have had. It wasn’t until a few minutes later when I inadvertently threw up a box of half-digested macaroni and cheese all over the floor that he diagnosed the pain as air in my chest from eating too fast. I don’t think I’ve ever been more mortified in my life as when he looked at me knowingly with big eyes and said in an exaggerated fashion, as if he were talking to a child: “Sloooow doooown.”

  To avoid the inevitable judgment of others, I was accustomed to eating alone, and when I had to do it in public, say at dinner with family or friends, I would fill up on something before I went, so that I could just pick at a salad in front of other people. I never wanted to be the fat girl who had to eat, and I went to great lengths to hide it. If I went through a drive-thru, all I could think about was how disgusting and lazy I must look, so if I ordered a combo, I’d also ask for a second drink different from my own (the same drink could just look like an extra for me!) to give the illusion that maybe two people were splitting the meal.

  My weird behavior that revolved around food kept me on edge constantly. One day my roommate offered me a slice of the homemade red velvet birthday cake her mom had left on our kitchen counter. I, of course, declined, but when I came home hours later, tipsy after a night out, the untouched cake was irresistible to my empty stomach. I took out a knife from the drawer and cut myself a small slice. Then I cut myself another. It was so good that when I stopped chewing, I realized I’d eaten half of my roommate’s cake. There was no way for me to explain this away and I couldn’t replace it with a store-bought cake without being found out. I was so afraid of what my roommate would think of me if she came home to see that I’d indulged in three times more than the slice she offered me. Panicky, I looked at the clock—it was after two A.M., the bars were closed, and I knew she’d be home soon. I had to do something fast. In a stroke of desperation, or perhaps brilliance, I picked up the glass plate that held the cake and slammed it down onto the kitchen floor, watching it break into huge, jagged shards. Then I smeared icing and cake on the floor, swept the glass into the trash can, and transferred the fallen cake remnants to a plastic bag I disposed of in the dumpster. I cleaned up the kitchen about three-quarters of the way and scrawled a note to my roommate:

  I am SO sorry girl! I’m a little too drunk and I knocked your cake off the counter. Watch out for glass. I’ll mop in the morning and buy you any cake you want. I am SO SORRY!!!!

  With my feet still in the stirrups, the nurse practitioner at my OBGYN’s office, Liz, sat on a little wheeled stool, furrowing her brow over my medical records. Then she said something that would change my life.

  “I think you have PCOS.”

  I had never heard those four letters put together and had no idea what they meant. Liz gave me some pamphlets, scheduled some tests, and sent me on my way. When I got to my car, I started thumbing through the glossy pages with photos of smiling women and their families. I was quickly overwhelmed with information as I scanned the major takeaways on the disorder: words like fertility, insulin, risks, no cure, androgens, weight gain. I learned that PCOS (polycystic ovary syndrome) is an endocrine disorder that affects one out of ten American women. It was a syndrome with no cure, marked by sudden and severe weight gain, difficulty losing weight, infertility, irregular periods, acne, thinning hair, and excessive facial and body hair. As I pored over the literature, my heart started beating faster. Everything I was reading sounded just like me.

  I drove to my parents’ house in a blur. I spread the pamphlets out on the kitchen table to show my mom. I started Googling. Within minutes I got scared: it seemed like my diagnosis was less of an explanation and more of a warning. The statistics were harrowing: more than fifty percent of women with PCOS will have diabetes or prediabetes before the age of forty; the risk of heart attack is four to seven times higher than in women not affected by PCOS; women with PCOS have greater risk of high blood pressure, high “bad” cholesterol, and low “good” cholesterol; and PCOS is linked to endometrial cancer, sleep apnea, anxiety, and depression. As if that wasn’t enough, I read on, women with PCOS have higher rates of miscarriage, gestational diabetes, preeclampsia, and premature delivery, if they do succeed at becoming pregnant. I looked at Mom as the gravity of this disorder hit me.

  “Does this mean I can’t have kids?” I whispered.

  “I don’t know, honey,” she said. Then she shook her head. “No, I’m sure it doesn’t mean that.”

  That night, I called Eric and told him the news that there wa
s this horrible disorder and my doctor thought I had it. He tried his best to console me, mostly reminding me that I hadn’t been officially diagnosed and might not have it at all.

  “Would you still marry me if I can’t have kids?” I asked, my voice wavering.

  “Yes,” he promised. “I will still marry you.”

  As I drove back up to the mountains that night, I considered all the possibilities and felt a range of emotions. On the one hand, I was relieved—this was quite possibly an answer for all the questions I’d had for years about what was going on with my body. I also felt angry. Why was I just finding this out? Why had I never heard of PCOS before? Why did it take this long for a medical professional to wonder whether I might have it? Why had all my previous questions been ignored? Each time I’d asked my doctor why I kept missing my periods, I was told I was just young and irregular. Each time I’d gotten on a scale, my weight gain was dismissed and attributed to college, or birth control, or Prozac, or drinking. I’d never even known who to tell about the handfuls of hair that came out every time I ran my palm through my ponytail, the black, coarse hairs that had begun popping up on my chin (a result of too much testosterone), or the ridges on my nails (evidence of insulin dysfunction). After all of this frustration I realized that perhaps PCOS had been the reason I’d uncontrollably packed on the pounds starting as soon as I got to college.

  Sure, my drinking, food choices, depression, and inactivity were partly to blame, but I spiraled into those patterns only because I’d gained 100 pounds so quickly and seemingly out of nowhere in the first few months of college. Now, realizing I might be suffering from PCOS, I tried, for just a second, to wrap my head around the idea that maybe there was a medical issue at play. Maybe I wasn’t simply lazy and disgusting and inherently broken. But I’d been beating myself up for as long as I could remember and I didn’t have any more space to let another idea inside.

  A few weeks later I returned to Greensboro for my tests. In order to rule out Hashimoto’s disease, thyroid problems, and even a benign brain tumor, I underwent test after test. Everything was negative. Liz explained that there is no definitive test to diagnose PCOS, but that I had some telltale symptoms like chronic anovulation (lack of periods) and hyperandrogenism (an excess of male hormones, like testosterone). After the tests indicated that I was insulin resistant, I was officially diagnosed with PCOS. (I wouldn’t have an ultrasound until I was thirty-one, lying on my back in a specialist’s office as he counted my ovarian cysts, approximately thirty in total.)

  Since the diagnosis raised many more questions than it provided answers, my dad helped me find a well-respected endocrinologist in Greensboro and I headed back home for the appointment. My parents accompanied me into the doctor’s office. We were all nervous and counting on him, hoping that when we left, I’d know exactly what I needed to do to beat this thing. But it didn’t have a cure—was “beating it” even possible?

  My first impression of the doctor was dismal. After recounting nearly a decade of periods, weights, and other various symptoms, I lay down on his table to undergo a physical examination. He worked his way down my body, starting with the lymph nodes under my jaw, and when he got to my stomach, he lifted up my shirt. “Do you shave the hair on your stomach?” he asked. “No, I don’t have any excessive body hair,” I reminded him, annoyed that he didn’t remember from earlier in the appointment when I’d given him an overview of my symptoms. Before we left, he wrote a prescription for metformin and another drug, saying, “This should help with the excessive body hair.”

  My experience with this doctor was unfortunately not unique. Although he’d explained some of the more technical aspects of PCOS, I didn’t feel like I’d been listened to as an individual. It so happens that I have every symptom other than excessive body hair. Because PCOS is a grouping of symptoms, each woman can have a different combination of them. It’s possible, for instance, for some women with PCOS to get regular periods, and a third of women diagnosed with PCOS have never struggled with their weight.

  Disappointed with my doctor, I returned to my apartment with some pills and a lot of confusion. I was not alone in this. U.S. News & World Report Health*1 describes PCOS as a “silent disorder that wreaks havoc on the body,” and sheds light on the emotional toll of PCOS. Part of that article reads as follows:

  Gretchen Kubacky, one of the few psychologists in the nation who specializes in PCOS, assists women dealing with the “emotional fallout” of having the condition. Many have been struggling with infertility, weight gain, hormone imbalances, and other medical issues for years without a definitive diagnosis.

  “By the time they get to my office, many show signs of depression,” Kubacky says. Depression is four times more common in women with PCOS, and a third of all women with PCOS meet the criteria for major depression, she says. They are also more likely to experience anxiety, low self-esteem, suicidal thoughts, and eating disorders.

  Many struggle with poor body image. “They have facial hair, male pattern balding, and hair on their body where it doesn’t belong. Many are significantly overweight. This is not the American ideal of what a woman should [look] like. The body shaming is sort of a micro aggression that gradually erodes a person’s psyche,” Kubacky says.

  The lack of awareness among medical practitioners compounds the problem. “There’s a lot of blame in the medical arena. Doctors who aren’t aware of PCOS think people just can’t control themselves or aren’t working hard enough to lose weight. Yet these women exercise and diet constantly, and they still weigh 200 pounds.”

  I was battling so many feelings, and outrage was right at the top—outrage at the people, the syndrome, the shame that had led me here to this moment, now lying on my carpet in the fetal position, crying over what my twenty-two years of life had become. I yearned to have the body I’d had just four years earlier—the body that society had still told me wasn’t good enough, and the body that even I didn’t appreciate at the time. I wanted to know why my family had sent me to nutritionists instead of therapists. Why my friends never argued with the fact that I wouldn’t wear shorts. Why hadn’t someone—anyone—told me I was good enough the way I was?

  Sobbing into the carpet and not knowing what to do, I dialed my father. When he answered and heard my muffled tears, he gently asked me what was wrong.

  “Daddy,” I wailed, “I love you. I want you to know how much I love you. But I think some things have gone wrong.” I told my dad how much some of the things from my childhood had affected me. Seemingly innocuous things: my mother’s constant refrain of “suck your stomach in,” my dad’s readiness to find me a nutritionist, his unintentional but hurtful offhand comments that policed my weight and appearance, the magazines that published only thin girls on their pages, the incessant advertisements for weight-loss plans and quick fixes, and the fact that no one seemed to care enough to intervene even through the years when they knew I was in a dangerous cycle of restriction and purging.

  One, or even some, of these things might not have derailed the self-worth that I’d like to believe is innate in human beings. But all of these things, coming at me from every direction, had broken down a talented dancer, a soccer champion, a prom princess. They left this twenty-two-year-old woman feeling like a lost child, desperately searching for any kind of assurance that her life was not completely over when she felt with every fiber of her being that it was.

  For over an hour my dad listened to me babble almost incoherently about everything in my life that had culminated in this moment. He apologized for his mistakes. He reinforced that all he wanted was for me to be happy. And, as I suspected he would, he promised me everything would be okay. What people don’t realize about that statement—“It will be okay”—is that sometimes it won’t. And no one tells you that “okay” might not happen for a decade down the road.

  Knowing now that I had PCOS, I rededicated myself to making the best of the rest of my college career. I was not on track to graduate in four years, so I
planned to graduate in five. I got cast in two main stage productions: once as an authoritative, nasty landlord in Brecht’s The Good Woman of Setzuan, and the other time as a grandmother in the farce Moon Over Buffalo.

  I was happy that I had finally secured some success in the theatre department, but it was obvious to me that I’d been cast in those two roles only because they were the kinds of women (old and bossy) who are allowed to be fat. Even though my professors championed “nontraditional” casting, it was apparent every time a cast list went up that this applied to an actor’s race and gender, not his or her weight.

  I branched out and made some decent friends in the theatre department. I joined the theatre honor society, Alpha Psi Omega. I quit drinking so much. I found a nutritionist who helped deal with my emotional turmoil. I read Buddhist texts and meditated, often driving the Blue Ridge Parkway alone for peace of mind and solace. I was making some solid improvements in my life and my depression was lifting, but that’s not to say things were easy.

  I had a lot to come to terms with, and PCOS was at the forefront of my mind. I wished I had been diagnosed sooner. I wished that I hadn’t been so ashamed to go to doctors and that I’d pushed them to see if there was anything wrong with me as soon as I started gaining weight my freshman year. But I was also disgruntled that no one had noticed or cared about my symptoms, starting from the very first one: the absence of my period. And I knew that PCOS was to blame for my initial weight gain. Sure, most people gain weight their first year of college, but I’d gained a tremendous amount uncontrollably. I felt like I’d been forced to put on a fat suit and go out in public. I had no protection against the insults, the isolation, and the shame. By the time my freshman year had ended, I’d already started going downhill. I’d opted out of my life, preferring to be alone, safe from ridicule. I’d stopped dancing, which stifled my joy. I drank too much. I rarely left my house. Everything I had done to cope had only compounded the problem.