Anorexia, Then Breast Cancer: What I Learned About Stigma and Support

Posted by Kira Goldenberg

At the end of the summer I spent as a live-in nanny in the Hamptons, I was changing into a swimsuit to join my charge in the pool—life was hard—when my fingers brushed against a lump I’d never noticed before. It was small and hard and nestled at the top of my left breast. The child’s mother told me not to worry—at age 26, it was likely benign.

I reported for the grope, ultrasound, and biopsy anyway. It was not just a cyst or a fibroadenoma (a benign tumor). I told my parents first, then began quietly reaching out to close friends. My mom coped from the start, on the other hand, by telling absolutely everyone—friends, family, neighbors, synagogue acquaintances, fellow morning dog walkers—that her daughter had cancer.

For better or worse, my mom’s openness meant I found myself enveloped by a vast pep squad, many members of which were breast cancer survivors. Well-wishers sent me optimistic thoughts, offered shoulders to lean on, and inundated me with what I took to calling #cancerswag. Half a dozen visitors drove in from hours away. Two doctors offered me prescriptions for Ativan. The parents of the towheaded toddler next door invited me to smooch his rosy cheeks whenever I wished. Mom bought me two new pricey pairs of pants.

Then there was the food: Within weeks of my breast cancer diagnosis, I netted two cupcake deliveries, an invitation for Indian food, and a rooftop Prosecco outing. And while I appreciated the sentiment, these supporters didn’t know that I had reacted to my plight the way I reacted to every situation I could not control since I was 15 years old: I stopped eating.

I had ostensibly recovered from anorexia five years earlier, though according to the American medical system, I had never suffered from it at all—The Diagnostic and Statistical Manual of Mental Disorders currently requires that a woman lose her period to qualify for the diagnosis. Instead, I’d spent years relegating myself to a highly restrictive diet without ever earning an official label. I subsisted on yogurt—I hate yogurt—and tasteless protein bars. Two slices of Muenster cheese constituted a decent lunch. I was quite thin, but nobody could convince me I wasn’t pudgy.

It was terrifying to feel hungry and deny myself sustenance, but it also made sense—I had suddenly found an outlet for years of unsettling stress I didn’t know how to express. When hunger set in over my brain like a fog, it kept my mind safely, sluggishly away from scarier things, like dark feelings and wild aspirations. Early on, so hungry I couldn’t focus on my schoolwork, I confided in an understanding faculty member at my high school, then spent the next couple years dutifully explaining myself to shrinks and nutritionists who handed me food diaries and set me on a weekly weigh-in schedule.

I hated being forced to log every tiny bite. Outside of the clinical setting, talking was even more difficult. My pediatrician told my parents it was “a phase.” Broaching the topic with them led to shrill and hysterical fights that ended with me refusing dinner. In public, we held my eating disorder close, a family secret. No proud community of anorexia survivors emerged to assure me I would be ok. There were no presents.

Then, in college, I finally met the therapist who would save my life—she was prone to odd fitness phases, blind in one eye, and in the habit of wearing knee-high black boots straight through sticky Manhattan summers. We built a trusting, fond relationship over the next couple of years, and I became an active participant in my own recovery. Like a recovering alcoholic, I cultivated tools to counter the fictions my mind told me about food. I’d dig into my anti-anorexia toolkit—remind myself my clothes still fit; sit with scarves draped across my lap to hide the dreaded thigh spread; prepare soupy foods that were easy to swallow. The fog thinned. I worked, fell for yoga, and learned to love my physical strength. Then, cancer.

Suddenly, my tricks were no match for the discovery of something wrong inside of my body. From the moment the cancer was detected, I let the fog close in again.

The relapse felt reassuring, and that terrified me. I reasoned that my hunger worked as a buffer to help me weather an onslaught of doctor’s appointments (which made me feel like a ping pong ball with breasts), a lumpectomy with all its attendant uncertainties, and a recovery where, unable to use my left arm, I was forced to forgo the rigorous, physical yoga practice I depend on to keep my body image in check. Then, my doctors slated me for 35 radiation treatments. Unfamiliar with my medical history, they told me it was essential that I eat well to heal from the inevitable exhaustion and the burns.

Breast cancer affects more than 12 percent of American women. Only about half of a percent suffer from anorexia. If the breast cancer survivor community is stronger, it is because there are simply more of us. Then again, that half-percent only applies to anorexics who fulfill the diagnostic checklist. Beyond the statistics, our society shies away from discussing eating disorders. We have yet to kick the notion that the anorexic shoulders some of the blame for her own illness. Try suggesting that to a cancer patient.

Only once I received my cancer diagnosis could I understand that societal stigmas were my least pressing concern. Unable to recover alone, and with my health very much at stake, I loosened my vocal cords. I started treating my mental illness like my mother did my cancer—by talking about it, everywhere, all the time. My yoga teacher and old friends took me out for lunches, because I told them it’s easier for me to eat when I’m in entertaining company. I cried beside my favorite nurses. One suggested I try Carnation Breakfast Essentials, a game changer that filled my homemade lassis with nutrients. The other made herself available for hugs whenever I needed them. Finally, I told my beloved college therapist, who called me the morning after her wedding to make sure I was ok.

My urge to stop eating didn’t go away. But instead of receding into my own private anorexic thoughts, I now had dozens of little lights to help guide me through the fog. At first, it was jarring to see sympathetic faces everywhere I went, to know that my two big health struggles were foremost in their minds. But I eventually came to recognize them as fans populating the sidelines of my path to recovery—though I wished at the time they didn’t send Edible Arrangements all at once. All their support gave me the incentive I needed to stay as alive as I can. So, I ate.

Photo via (cc) Flickr user XPeria2Day