Don’t Let Your Eating Disorder Dissuade You From Getting Help
By Tara Criscuolo
This blog is published in collaboration with our friends at Project HEAL!
As I type this, I’m on a weekend trip in honor of my 10-year eating disorder residential treatment admission anniversary. I’ve been hiking with my dog, drinking iced lattes, eating yummy food, sleeping, and reflecting.
All month leading up to this milestone, I’ve been giving mental health talks through NAMI’s In Our Own Voice and Ending the Silence programs, and on my own as a disordered eating and diet culture “expert”. In each of the six talks, I spoke about the causes of my eating disorder, warning signs, levels of treatment, ways my family and friends supported me, and prevention (dismantling diet culture, normalizing body diversity, deconstructing “health”, etc.). I shared that I ascended from outpatient therapy to Intensive Outpatient Program (IOP), Partial Hospitalization Program (PHP), and finally Residential, before descending all the levels again. I recounted how my PHP therapist kicked me out of the program for disruptive behavior, recommending I admit to residential, and how I laughed at her – I wasn’t sick enough, even though I’d lost my period, was cold all the time, had a low heart rate and electrolyte levels, obsessively read ingredient lists and watched baking shows, no longer had many friends, frequently isolated, and barely had a relationship with my family. I reasoned that I wasn’t as thin as others who were struggling, plus I was still getting good grades and working several jobs. I wasn’t sick enough to need residential.
This is unfortunately very common. At least one in 10 people in the US will be diagnosed with an eating disorder in their lifetime. However, some experts suggest that eating disorders affect up to half of the American population, and disordered eating affects the vast majority. So many more people are “sick enough” for treatment than are actually getting it. But it’s a privilege to access treatment in the US without having to pay out-of-pocket. Eating disorder diagnoses are still rife with weight bias, but less than 6% of people with eating disorders are medically underweight. The US medical insurance system is, after all, a for-profit industry, and insurance companies don’t want to pay for astronomically expensive levels of care if they can justify denying patients because they don’t meet outdated definitions of “sick enough.” This doesn’t even touch on doctors’ frequent failure to identify eating disorders in the first place. Only 17% of Black women, 41% of Latina women, and 44% of white women are accurately diagnosed by doctors when presenting with an eating disorder. And if folks do begin treatment – whether covered by insurance or not – there’s no guarantee it will be trauma-informed, culturally competent, or free of anti-fat bias.
Ever since I began speaking openly about my eating disorder seven years ago, and then became an eating disorder recovery mentor, first through Project HEAL in 2019, and then ANAD when the program changed hands, I’ve repeatedly heard some iteration of the not sick enough argument. Some people I’ve spoken to don’t think they’re even sick in the first place. Others acknowledge that they’re struggling but don’t think they’re sick enough for treatment. Some know that they’re sick enough for treatment but don’t think staying in their disorder is that bad (even though eating disorders are the second most fatal mental illness, second only to Opioid Use Disorder). Regardless, I want you to know that if you’re struggling with your relationship with food, movement, or body – to any extent – you’re sick enough for professional support and care.
You're Sick Enough If...
- You engage in compensatory exercise.
Feeling the need to “burn off” what you ate or drank is not healthy. Nor is feeling like you need to exercise every single day regardless of how tired you are, or if you’re sick or injured. It’s very possible to have a positive relationship with exercise, or “intuitive movement” as I call it nowadays. I now only move my body when I feel like it, and when I do, I participate in activities that I enjoy. I explore the Pacific Northwest with my dog (like I did this weekend), play on a rec softball team, go to recovery yoga with other sober folks, play tennis with a friend, or clean barns at an animal sanctuary.
- You constantly think about food, exercise, or how your body looks.
Food, exercise, and your body should not take up the majority of your headspace. Two of the many benefits I gained in recovery were (1) time and (2) the emotional capacity to be present with loved ones and discover new hobbies. Now I generally only think about food when I’m hungry, movement when my body is telling me that it wants to stretch or get some energy out, or body if I’m injured or wearing uncomfortable clothing (which I’m working to replace with comfy clothing!). And if I do have negative body image episodes, I use positive coping strategies and feel better much more quickly than I used to. (Here are some body image resources: Beauty Redefined, Lindley Ashline 1, and Lindley Ashline 2.)
- You regularly weigh yourself, and that number greatly impacts your mood and/or body image.
There are very few times when knowing your exact weight is medically necessary for adults: if you’re undergoing anesthesia, certain medication dosing, pregnant (though the baby’s growth can be measured in other ways), and, some argue, in eating disorder recovery (but only the doctor needs to know!). I haven’t weighed myself, or known my weight, in over 10 years. If my weight is medically necessary for doctors to know, I get on the scale backwards and ask them to not tell me the number or write it on the visit summary handout that I’ll receive at the end of the visit. You can decline being weighed at the doctor’s office if it’s not medically necessary, and *hint*, it’s not most of the time. I will clarify that significant, unexplained changes in weight in either direction can be an indicator that something is going on that might benefit from a discussion with your doctor (see the Providers section of my resource doc for several lists of weight-neutral providers in the US). But I personally would know if a drastic change happened based on how my clothes fit (or didn’t fit), so there’s no reason for me to own a scale.
- You’re scared of what will happen to your body if you eat certain foods (outside of a legitimate food allergy).
The two most common fears I hear are (1) gaining weight and (2) health implications of perceived “unhealthy” food. Let’s start with weight. In reality, weight is complicated and highly genetic. A person’s weight is not determined by “calories in, calories out.” Instead, there is a myriad of factors that affect our very individualized weight: genetics, medications, food access and consumption, sleep, disordered eating, gut microbiome, socioeconomic status, physiological stress, metabolism, thyroid health, puberty/hormonal changes, dieting, trauma and systemic injustices, race/ethnicity, physical activity, and more. Of course I’m not saying that no one who enters ED recovery will ever gain weight. I did. I needed to. But I eventually settled into my weight set point range and stopped gaining.
Now let’s talk about possible health implications. Public-health researchers have found that when it comes to modifiable determinants of health (that is, the things over which we have some individual or societal control, as opposed to genetics, which we can’t change), eating and physical activity combined account for only about 10% of population health outcomes. Other health-related behaviors account for only another ~20%. So if you’re terrified to eat foods you deem “unhealthy” (like I used to be), nutrition actually plays a much smaller role in our health puzzle than diet culture and society lead us to believe. Having an eating disorder will be so much worse for your health than any individual food could ever be.
- You intentionally purge your food.
Repeatedly purging your food (at any frequency/rate) is very dangerous. If you do so and think you’re not sick enough for treatment because you don’t see any external physical warning signs, please don’t underestimate the scary things that may be happening inside your body.
- You’re constantly worried or complaining about “feeling fat.”
Whether you’re struggling with a distorted body image or internalized fatphobia, regularly thinking about and fearing becoming fat is no way to live. When your thoughts are constantly focused on your body/weight, you miss out on life. Christy Harrison, MPH, RD, CEDS calls diet culture the “Life Thief” because it steals your time, money, well-being, and happiness. I’d argue that eating disorders are the Life Thief x10. This being said, if you do have a larger body, fearing weight stigma and anti-fat bias is completely understandable in the world that we, unfortunately, live in.
- You regularly diet, count calories, count macros, calculate body fat percentage, etc.
Contrary to what diet culture tells us, diets do not result in long-term weight loss for the vast majority of people AND they’re bad for your health. In reality, our bodies are really smart. We don’t need to count calories or macros, calculate body fat percentage, etc., for them. They can generally manage all of the internal mechanics for us and will let us know when they’re hungry or full, tired or want to move, etc.
- You only eat self-proclaimed “healthy” foods, abstain from eating when those aren’t available, and think you’re better than others because of your commitment to health.
Orthorexia is the unhealthy obsession with eating healthy. In our health-focused society, orthorexia can often go unnoticed or even be encouraged. But, it’s a serious eating disorder that can lead to significant health problems and even death, not to mention the negative social consequences you may face when you’re unable to go out to eat with friends (trust me, I know). Plus, to quote Ragen Chastain, “health is not an obligation, barometer of worthiness, completely within our control, or guaranteed under any circumstance.” It’s a privilege.
You’re also sick enough if you’ve experienced physical symptoms (or behavioral symptoms besides those listed above), but I want to be clear that eating disorders are behavior disorders, not weight disorders. You can suffer from a debilitating eating disorder without losing weight, your period, body density, etc. And despite common misconceptions, anyone of any size, age, gender, race, ethnicity, sexual orientation, socioeconomic status, ability, etc., can develop an eating disorder.
Ten years ago, I was sick enough for treatment. And you are too if you’re struggling with food, exercise, and/or your body image – even if you don’t have a diagnosed (or diagnosable) eating disorder. Whether you start with in-person 1:1 therapy or silently listen in on the occasional virtual support group with your camera off (my last ANAD mentee used to do this), there are people who can and want to help you.
Tara Criscuolo (she/her) is a brand marketer, mental health educator, and disordered eating speaker and writer based in Portland, OR. She’s recovered from an eating disorder and her healing journey spurred her passion for normalizing mental health, dismantling diet culture, and creating a world that’s safe for everyone to show up as their authentic selves. When she’s not working, she spends her time volunteering for NAMI Multnomah as a Mental Health Presenter, Project HEAL as the National Blog Manager, ANAD as a Recovery Mentor, and AFSP Oregon as a Board Member; compiling resources for those struggling with body image and/or an eating disorder; napping; exploring the Pacific Northwest; snuggling her dog Mazie; roller skating; playing tennis; and reading. Visit her website taracriscuolo.com to learn more.