“Are you happy?”
I sat up in our bed. My face flushed with embarrassment.
“What?”
“Are you happy?” I noticed he was shaking. This wasn’t a question, not really. This was an acknowledgement. This was the truth. After six years together, this was an admission that my boyfriend could no longer pretend he didn’t see what doctors and family members had seen for a long time. He could no longer accept the lie that I lived everyday, the lie that I could be happy living the way that I was. With this question, he stripped me of the disguise I’d built as a baker and a food lover and a dedicated worker and a high school sweetheart. He exposed me as anorexic, obsessively anxious, depressed, and chronically lonely.
For years, my family had been sharing their concerns with me. The more I got control over my diet and exercise routines, the more they accused those routines of being disordered. I agreed to meet with a team of doctors to see if they might be right, but I never felt the evidence was clear. I visited a gastroenterologist, nutritionist, and therapist weekly for several months. I would stare blankly at the floor as the doctor shook her head at the numbers on the monitors. I was convinced she was misunderstanding the results. Low blood pressure, low heart rate, low BMI—these were goals, not issues. My therapist would ask me to write letters to my family explaining why the size of my body meant so much to me. I would borrow words from pro-anorexia Tumblr accounts because I didn’t relate to the question. My body meant nothing to me; it was simply a tool. When a lump of fear would rise in my throat at the suggestion that I should add the yolks to my eggs at lunch, I convinced myself the request was ridiculous because I didn’t like the yolks—ignoring the daydreams I had to let the gooey golden centers soak a slice of sourdough toast, softening it into supple bites that I would savor like a delicacy.
The doctors were a way for me to quiet my family’s worries, and I left their care feeling stronger and less sick than ever. My relationship with food didn’t feel like part of me, it was me, and outside of doctor’s offices and my parent’s house, I received nothing but affirmations for the way I was living. My bosses at work were ecstatic with my long hours and my tenacious work ethic. My boyfriend continued to love me and never questioned why I skipped meals or made totally separate ones full of only vegetables for myself at dinner. Strangers would ask with envy how I stayed so slim working with all of the sweets. I’d get compliments from former classmates for losing instead of gaining a freshman fifteen. Even when my period disappeared and I started to wonder if I should go back to my doctors, I convinced myself that a period wasn’t the worst thing to lose. When I started graying out as I lugged fifty-pound bags of flour and sugar up the stairs at work, I convinced myself this was a sign of my endurance, my strength, my dedication.
I didn’t see that I was depressed or lonely or anorexic until my boyfriend asked me a second time if I was happy. We broke up that night because I wasn’t, but I didn’t understand why. I couldn’t stand being so vulnerable in front of him. At the time, I didn't think he could stand my vulnerability either. We spent the night crying and crying and crying, but we hardly said a word. Inside, my mind was consumed with terror and grief and dread. I was mourning the loss of my boyfriend and best friend. I was terrified of who I’d be without him. I was terrified of who I'd become. He’d shattered something in me that night, and I could no longer pretend that I was happy or even mildly content. After four years of starving, convinced that this was the path to ultimate success, the gig was up. My most trusted ally through all of my family’s concerns had now recognized the darkness that lay beneath my surface. He’d lived with my exhaustion and agitation. He’d recognized my hunger as bigger than just the food that eluded me. This was him acknowledging that I needed something more than he could offer.
I called my mom. I told her that something was wrong with me, and I didn’t understand what or why. She got me into a more intensive treatment program as soon as possible. She fought with the insurance companies when they argued that my BMI wasn’t low enough for me to be in intensive eating disorder treatment. My whole family visited group therapy for friends and family of folks with eating disorders. My then ex-boyfriend visited, too.
It often takes years of suffering for someone with an eating disorder to admit that they might have something about them that needs attention. Sometimes, it takes terrifying health scares or forced hospitalization. Sometimes, we just get sick of ourselves. Sometimes, it takes your boyfriend asking you if you’re happy. The disorder itself revels in isolation, convincing you that no one would understand even if you wanted to admit that your relationship with food is different or weird or dangerous. When I was in it, I felt invincible and powerful and disciplined and productive. Because I was thin, I received affirmations that this was true. To see the pain and suffering that coexisted with these feelings took my relationship imploding and my life being entirely uprooted from my home and my routines. Even still, I went through phases of regret that I’d made that phone call to my mom.
I’ve been thinking a lot about this memory. I’ve been thinking of all of the vulnerable humans who will one day realize that their relationships with food and their bodies need attention, whose partners or siblings will finally help them see their pain. I’ve been aching for those gathering all their bits of strength to finally make that call and admit they need help. I’ve been gutted thinking about those who might not have a safe mom or dad or sibling or friend to call. For those in fat bodies or bodies of color or otherwise marginalized bodies who might be met with questions or accusations instead of compassion and care. This has all been on my mind heavily as I imagine a world in which countless people—like myself eleven years ago, terrified and confused and desperately needing help but perhaps still unsure what is making them so sad—are going to be met with a chatbot.
In case you missed, NEDA (The National Eating Disorders Association) recently fired its helpline staff in exchange for an AI program called Tessa. It took no time for them to disable Tessa because of reports that folks were receiving weight loss tips and methods of monitoring weight and body composition. There are many articles detailing the transition—might I suggest this one or this one—and the ways in which it was a massive failure. Rather than debating the details of the Tessa rollout and the continued ways that leadership avoids taking accountability, I’m more interested in looking deeper at their response to needs more broadly. It appears that NEDA still believes the future of their helpline, the place where suffering people and/or their friends and family go for support, is AI technology. I am finding that impossible to cope with.
Myself and other people with eating disorders often struggle immensely to get to the point where we admit we need help, but the truth is that of course we need help. Needs are a guaranteed element of the human experience. For generations, society-at-large would have you believe that the best among us are self-sacrificing mothers and stoic fathers and hard workers who needed only a little of their own elbow grease to find stability. While we inch our way out of this narrative, I still find evidence of our general aversion to needs all around, particularly in this case with mental illness. Instead of hearing and assessing needs, we strike to diagnose mental illnesses and their symptoms as problems. Mental health is the problem at the root of mass shootings, we say. Those suffering from severe depression and suicidal ideation have problems, we say. Experiencing a manic state in public is a problem, we say.
What those of us with mental illnesses have are needs, not problems. They may be different or more complex than yours or require more resources, but they are needs nonetheless. I understand why the needs of those with eating disorders may feel impossible to manage via a helpline—it was hard enough for me to manage my single disorder. Many times, these needs are entangled with other mental health diagnoses, and treatment requires that a health provider has the ability to adapt to the varying triggers and behaviors that might arise. What we need are dynamic and empathetic humans who are knowledgeable about our disorders, about where resources exist for us, about the challenges we’ll face trying to find affordable, holistic treatment. We need humans to tell us that we are not alone. We need to be believed as folks with a mental illness and not a lifestyle choice. We need all bodies to be taken seriously when they reach out for help. We need.
I avoided admitting that my eating might be disordered in no small part because that would be an admission that I needed help. I’d been with my boyfriend for nearly six years, and I don’t know if I ever asked anything of him. I listened to his music and watched his movies and drank his beers. When I lived alone in Chicago briefly, I didn’t even ask if he would remain my boyfriend from afar; luckily, he just assumed he would. If I admitted I needed help, I would have to start asking for things. I would have to ask for a unique schedule at the bakery so that I could participate in treatment three times per week. I’d have to take breaks to accommodate my meal plan. I’d be asking someone else to teach me more about my own pain and that felt shameful. I should have known. I shouldn’t have needed that help.
I began my healing journey over a decade ago, but until recently, I resisted associating myself with the online eating disorder community because they felt so needy to me. Their pages were filled with criticisms and calls to action. It felt so foreign and uncomfortable as I was still healing from a lifetime of suffering in needlessness. Now, as I explore writers and creators and activists who’ve been fighting for me and millions of others with EDs, I’m struck by the power that I feel in their demands that our needs be heard.
If anyone is well positioned to respond to and amplify those needs, it is NEDA. NEDA is the most prominent organization in the country for eating disorder education, advocacy, and treatment referrals. They have more money, staff, and clout than other organizations, and their helpline has been a crucial resource for people struggling with EDs and their families and friends for decades. I, like thousands of others, have participated in their awareness walks and donated money. For years, there have been calls from the active online ED community for NEDA to invest in more diverse voices, to offer more transparency in their advocacy, to act more aggressively against the powerful diet and wellness industry. And while these requests go largely unmet, NEDA still prevails as the leader in eating disorder recovery organizations.
With such notoriety, it’s no wonder their helpline is busy. Since the pandemic, there’s been significant growth in eating disorders, so the phones have been swamped. In describing why they were making adjustments to their helpline, leadership cited this magnitude of calls in comparison to the small number of paid employees available for those calls—only six paid workers were running the line with a team of volunteers. They highlighted experiences of their volunteers with callers who were in crisis and needed immediate and expert attention that volunteers felt unable to provide. These concerns feel extremely valid to me. I appreciate the need to reevaluate their model so that they could better serve the community they promise to serve. In discussions about why AI was poised to better address the growth in number and severity of phone calls, a vice president from NEDA had this to say:
[NEDA] volunteers are volunteers. They’re not professionals. They don’t have crisis training. And we really can’t accept that kind of responsibility.
This quote stops me in my tracks every time I read it. I’m struck by the insinuation that utilizing a chatbot removes NEDA from responsibility. Is Tessa to blame? Should we toss it down the chain of command to Tessa's creators and then to its coding and then the creation of coding and then and then and then? I’m surprised to hear her seemingly scapegoat the quality of her volunteers and staff when it’s been reported that the helpline workers—desperate to create a sustainable work environment and to continue providing a crucial service—unionized just days before NEDA fired them. I’m disheartened by the insinuation that suicide and self-harm—the crises in question—might be new co-existing considerations. Eating disorders are one of the deadliest mental illnesses because of the harm it does to your body, your mind, and your ability to see yourself as a human with needs that deserve to be met.
I respect that NEDA sought to rethink its approach to managing its helpline, but what I cannot grapple with is that they were willing to risk doing harm in the process. In their quest to manage the desperate humans reaching out to them for help, they gave them a robot. With more resources than any other organization, NEDA turned away from investing in personal connection and care and toward efficiency. The community of eating disorder sufferers said, we need help addressing this pain, and NEDA said, this is a problem. NEDA’s helpline staff needed a more sustainable work environment as they navigated the growth of phone calls in magnitude and severity, and the response from leadership was, this is a problem. Needs are not problems. Needs are not problems. Needs are not problems.
Young Vanessa was lucky to have a boyfriend, a mom, a dad, and two siblings to trust with the realization of my disorder. I was lucky to be believed, to be met with listening ears and troubleshooting and people who had words to describe what I was going through when I had none. I was lucky to have my needs met. I am devastated for the people who don’t have that and reached out to NEDA—the first resource Google provides, even when specifically searching for alternative organizations—and were met with a chatbot. I’m furious that the leadership at NEDA keeps referring to the future as one that includes Tessa. We need humans. We need trained humans. We know it’s possible because there are other, lesser known organizations that are prioritizing our needs. They don’t all have helplines, because they are honest about their capabilities and unwilling to put people in more pain than they’re in. They’ve put their investments into creative solutions. Below, you’ll find a link to these organizations. Share them with your friends if they need help.
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