When illness causes weight loss, reactions from friends, family, and even strangers can be “positive” in the worst possible way.
When I was 27 years old, I weighed 105 pounds and was extremely sick. Over a span of 15 years, I’d been extensively treated twice for Lyme disease, with waves of debilitating illness interrupting periods of restricted but relative health. This go around, I wasn’t sure if it was Lyme again. I only knew my body was breaking.
I was tired all the time, alternating between insomnia and sleeping for hours on end. I lacked the brainpower to read a book. I was in so much pain that I had to be on opioid painkillers at all times or I couldn’t lift my body off the couch. My digestive system was on strike and I struggled to force down 500 calories a day. My forearms became so weak that I developed tendonitis in both wrists. I had to quit my jobs and was essentially homebound in my apartment in Astoria, Queens—just my boyfriend, my cat, my illness, and me. My dad, Catholic to the core, offered to fly me to Lourdes so I could bathe in its healing waters. We were desperate.
The fact that I can actually think wistfully back on my incapacitated bikini body is a sad commentary on how prized thinness is in our culture.
And yet, when a girlfriend saw me stepping into the pool at my parents’ home, shivering in the hot August sun, with opioid patches on my chest and braces on my wrists, she looked at my bikini-clad body and said, “Oh my God, I am so jealous of how skinny you are.”
Eight years later, I’m jealous of me, too. Considering how sick I was then, and how much healthier I am now, the fact that I can actually think wistfully back on my incapacitated bikini body is a sad commentary on how prized thinness is in our culture. Not only by well-meaning friends and family whose knee-jerk reaction to a reduced body size is usually a compliment (even if that weight loss came at a terrible price). But also by women like me, who’ve actually suffered terrible illnesses and lived to gain back both weight and health. Deep down, I think we all know that the old axiom, “When you have your health, you have everything,” is true. But that reality is easy to forget when the tidal wave of positive reinforcement around weight loss subsides, and one is left with just a regular, normal, healthy body instead of a super-skinny sick one.
In 2013, comedian Tig Notaro did a standup set detailing a string of events in which she got C Diff (a dangerous intestinal bacterial infection), her mother died, her girlfriend broke up with her, and she got diagnosed with breast cancer, all within a short period. During the set, she shares a story: Mere days after her cancer diagnosis, she’s about to get a mammogram when a medical technician looks at her and says, “Oh my God, you have such a flat stomach. What is your secret?” Her response? “I’m dying. Pure and simple.”
It is brutally honest, darkly funny, and a brilliant moment of live theater. But her unadorned, blunt delivery sheds light on how people can be so grossly unaware of a sick person’s suffering to the point where “thinness” is all they see. This is a problem.
No one wants to look sick. No one wants to present IVs or tubes or hairless heads or sunken skin to the world. I conducted an online survey of 285 women who currently live with or have lived through serious illnesses, and 55 percent said they’ve covered up their physical vulnerabilities with clothes and makeup. This allows us to feel more “normal” while helping others feel more normal around us, too.
To the outside observer, I never looked deathly ill, even at my sickest. On the way to doctor’s appointments, people would glare at me on the subway for rushing to a seat (to keep from blacking out, which I often did when standing). I practically lived in comfortable yoga clothes, so I looked constantly en route to the gym. As Notaro pointed out in her act, these assumptions often extend to those in the medical field, too. If you don’t “look sick,” doctors are quick to ask about your mental health before they search for a physical diagnosis (54 percent of the women I surveyed experienced this). Once, a pharmacist refused to refill my pain medication; from her minimal communication, I can only conclude that she saw a drug addict wasting away in front of her and not someone suffering from a scary medical condition who’d had to force feed herself a Korean yam earlier that day.
This issue of how a person looks contrasting with what’s actually going on inside is vividly illustrated in the 2011 documentary How to Die in Oregon. The film centers on Cody Curtis, a woman suffering from terminal liver cancer who asks for a lethal medication to end her life in accordance with the state’s “Death with Dignity Act.” At one point, Cody’s husband and daughter join her at an oncology appointment, where this disturbing conversation unfolds:
Husband to Doctor: “People have said that she looks more beautiful now than ever.”
Cody: “It’s just because I’m thin. That’s the only reason. Which is kind of upsetting, because it’s the way our society works.”
Doctor: “This is not a good message.”
Cody: “Yeah, I’m on the cancer diet, thanks very much.”
Seconds later, Cody asks her doctor, “I would like to know…how much longer?” Even while confronting the inevitability of her death, Cody has to battle the absurdity of her support system correlating thinness with beauty.
I hated not being able to eat, being so weak, and being in pain all of the time. But beingskinnywas at least…something.
When you feel sick on a regular basis and your health crashes down around you—taking your work and social life with it—it’s hard when those you love and trust compliment you on how you look purely because you’re skinny. Of the women I surveyed who had lost weight because of illness, 65 percent of them were complimented on their weight loss by friends, family members, and strangers. It’s a hard number to grapple with. Something’s wrong with how we put being skinny on such a high pedestal regardless of what that thinness really means…right?
A July 2015 article in The New York Times, titled “When Cancer Triggers (or Hides) an Eating Disorder,” poignantly brought this issue into the national discussion. The story follows a woman who lost weight during cancer treatment and reveled in her smaller size: “Ms. Emmets, now 39, filled her closet with extra-small size clothes,” wrote author Sophia Kercher. “At night she pressed her fingers against her protruding bones, saying to herself, ‘I’m finally skinny.’”
I remember this sensation clearly. As my weight dropped, I had all my pants taken in. I liked the way my cheekbones showed in photographs. In a 2008 journal entry on gratitude I wrote, “I am grateful for being skinny, despite the reason why I am so skinny right now.” I hated not being able to eat, being so weak, and being in pain all of the time. But being skinny was at least…something.
As my health started to return, I remember ordering a size zero bridesmaid’s dress for a friend’s wedding, somehow the tiniest of her tiny friends. When I asked the clerk if exchanges were possible since I anticipated going up a size or two relatively soon, there was an air amongst the ladies of “Why would you do that?”
After more than a year of being extremely sick, losing weight, and a long treatment plan, slowly—ever so slowly—I’d started feeling better. My body asked for fuel again, and I started gaining weight. I donated those taken-in clothes. My hollowed-out cheekbones filled and expanded. For a time, this was good. I got a new job, broke up amicably with my boyfriend, and moved to a new city. I did yoga without restriction. I felt physically comfortable with the men I dated.
Over time, however, after changing jobs again and moving back home to New York City, my symptoms returned: exhaustion, body pain, sleep trouble, food sensitivity, sensory overload, and social anxiety. I cut my schedule down, slept more, refined my diet, took supplements and herbs, and spent a lot of time alone resting. I didn’t get as sick as I had been in the past, but I didn’t return to a full level of health either. Meanwhile, my weight kept rising and rising. And I started to hate who I saw in the mirror.
Going over the write-in answers from formerly sick women I surveyed for this story, it quickly became apparent that I am not alone in this experience:
“I got a ton of positive comments after I lost the weight, but now it’s back on so I don’t love my body.”
“The weight loss made me feel amazing about myself, despite all of my horrible symptoms. From time to time I feel disgusted in my continued weight gain.”
“I don’t recognize myself when I look in the mirror. It’s very disorienting.”
“I received so many compliments that I feel fat now that I’ve gained the weight back.”
“I lost a significant amount of weight and was then sought after by modeling agencies and men. As I gained weight back I felt less than, and invisible.”
These are only a few comments submitted from surveyed women who had lost and then gained weight because of their illnesses. Eighty percent of those who had either lost or gained weight in general reported a negative effect on their body image. Many feel betrayed by the lack of control over both how they feel and how they look.
I am a feminist. I “should know better.” Intellectually, I value my skills, my compassion, and my contributions to the world far more than my reflection in the mirror. But somehow I can’t yet confidently own the face looking back at me.
W hen I was 105 pounds, I promised myself that once I was healthy and eating again, I would never feel guilty for any “extra weight” I might put on. I knew that being underweight didn’t serve me. But as my weight rose to 30 pounds above what was comfortable for me, and I no longer felt right in my skin, I couldn’t keep that promise.
I discussed these issues with Dr. Erin Kleifield, a psychologist and director of the Eating Disorders Program at Silver Hill Hospital in Connecticut. “I was just sitting with a patient who was detoxed from Klonopin pretty quickly,” she told me. “She’s at a very high risk for seizures, so she was put on a medicine that may temporarily cause some weight gain. She sat in a chair and said, ‘I’d rather be dead from a seizure than gain weight.’”
Similarly, in a blog post published on TheManifestStation.net, Kathleen Emmets (the same woman cited in The New York Times article) asked, “How is it that someone who fought so hard to live, still just exists in a body that she despises?” Emmets developed anorexia after her cancer treatment, using her illness as a veil under which she could obsess about her weight without causing alarm.
Problems like Emmets’ are likely more common than we know. Women with long-term chronic illnesses often cut out foods that can exacerbate symptoms, like gluten, dairy, sugar, processed foods, and meat at the recommendation of their doctors. I’ve been off many of these foods since my first diagnosis and I weigh myself every few days to check if something I’ve eaten has caused inflammation. For me, these practices are part of my search for better health, though I can see how for some, this kind of restricting can get out of hand.
The shame comes from feeling that it’s one’s fault. We need to be aware and we need to bring in compassion. So the essence of it is, ‘This is not my fault.’ Because it’s not.
But how do you know if you’re desperately reaching for better health or just desperately trying to lose weight? “You have to check your motivation,” Dr. Kleifield advises. “This is where you ask your intuitive self, ‘Where is this coming from?’ ‘Where’s the compulsion?’ ‘Will I be angry with myself if I don’t do it?’”
The words of the following survey responder perfectly sum up this struggle for me: “It is much more difficult for me to be overweight now that I have had a taste of being ‘skinny,’” she wrote. “Even though I lost weight from being so sick, I received an overwhelming amount of positive reinforcement from every aspect of society, including friends, family, coworkers, etc. I honestly think I would like to be that sick again if it meant I could have such a nice figure again. That is totally disgusting, but true.”
Like this woman, I’m still conflicted. I am a feminist. I “should know better.” Intellectually, I value my skills, my compassion, and my contributions to the world far more than my reflection in the mirror. But somehow I can’t yet confidently own the face looking back at me. And so I feel guilty, too.
“The shame comes from feeling that it’s one’s fault,” Dr. Kleifield says. “We need to be aware and we need to bring in compassion. So the essence of it is, ‘This is not my fault.’ Because it’s not. Women do blame themselves. So often it’s ‘I should be able to fix or control this,’ rather than letting go and surrendering. Bottom line: ‘It’s not my fault. It’s not my fault.’ And it’s not.”
I meditate, I pray, and I practice gratitude. I thank my body for what it can do. I squelch negative thoughts and anxiety when I’m intimate with a man. I restrain myself from talking negatively about my weight with others. I dress up when I feel like it and live in those yoga pants when I don’t. Overall, I am a happy, calm person as a result of those practices, despite still wishing my health and my body image were both in a stronger place. I recognize that I’m still a work in progress. This, I guess, is all we can ever do.
Here’s to all of us still fighting the good fight.
By Jacqueline Raposo
This article originally appeared in the April/May 2016 print edition of BUST Magazine. Subscribe today!
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