“The first time my mom realized that something was wrong was when I came home from school and I fainted on the porch. She was like, ‘Okay, let’s take you to the doctor.’ So that’s how it all started,” Jenna said. “I [would get] up really early, [and have] breakfast by myself. I didn’t really have breakfast. I didn’t eat. I wouldn’t eat lunch. [I would think], ‘I’m gonna eat less,’ but then it got to be, ‘I’m not eating at all.’”
Jenna, a Tam student who spoke on the condition of anonymity due to the personal nature of her experience, has anorexia nervosa and bulimia nervosa. Her disordered eating began in middle school and stems from her issues with body image, one of the many factors that can influence an eating disorder.
The two most common eating disorders, anorexia nervosa and bulimia nervosa (commonly referred to as anorexia and bulimia, respectively) often come from an intense fear of gaining weight, a desire for control, or a compulsion to self-harm, causing patients to avoid or “purge” food. Purging is when someone attempts to rid themselves of food they have already eaten by vomiting or abusing laxatives.
If their illness is discovered, patients attempt to avoid treatment, according to Dr. Daniel Le Grange, a world-renowned specialist in eating disorders who worked in the field for more than 20 years. He is currently employed at the University of Chicago, where he frequently works with adolescents and their parents. His philosophy focuses on early recognition of eating disorders and the importance of parents in the recovery process. “We have not had one teenager pick up the phone and say, ‘I think I have anorexia, can I please come to your treatment facility?’ Not once. And that’s because that’s just not part of the illness,” Le Grange said. “The crucial part of treatment is not to try to convince the adolescent to get better, because you say that to someone with anorexia and they say… ‘I’ll take care of this myself.’”
Jenna resisted treatment when her parents discovered her disorder. “I fought with everyone who was trying to beat my eating disorder. I fought with my parents and I fought with my doctors,” she said. Before her parents took her to the hospital, she yelled and swore at them. “I remember going to the hospital and on the way there I was like, ‘I’m done… I can’t do this.’ I tried to jump out of the car on the freeway, and then when I got there, I punched my doctor. He didn’t really get hurt because, obviously, I wasn’t strong at all. I was super underweight and my heart was barely beating, but I got pretty aggressive.”
Jenna’s body image didn’t immediately improve. “I [felt like], ‘Oh my god, you’re ruining my life. I’m already fat and you’re making me get fatter,’ which was ridiculous because I was so underweight,” she said. “I remember locking myself in my room, not eating for days. It was a bad time.”
Often, the kind of rebellion that Jenna expressed during her treatment deters parents from pursuing treatment for their child, fearing that they are becoming their child’s worst enemy or hurting their child’s recovery.
Le Grange believes that parents are a crucial part of the recovery process. “The main component of [treatment] is to involve parents as a resource and demonstrate that they are very effective in helping their kids get better again, whereas historically parents were often seen as part of the problem,” Le Grange said. “A lot of my work has been to look at parents as part of the solution.”
According to Le Grange, one of the difficulties associated with treating eating disorders is recognizing the early signs and symptoms. It is important to diagnose the problem early and treat it immediately. Le Grange explains it as if the disease were a tumor. “If it’s diagnosed early… [and] the adolescent is 12 or 13 years old, then I explain to the parents that if we work really hard…then we can eradicate the tumor in six months or 12 months…The child can be symptom-free and well on [his or her] way to full recovery,” Le Grange said. “It’s true for every illness that if you have the wrong treatment, or you don’t treat the [whole] package, or you don’t treat [it] immediately, or you treat half-heartedly, or you treat and get some results and then you stop, then you set the stage for a chronic presentation.”
Some common symptoms of eating disorders include increasing exercise, decreasing food intake or suddenly changing diets. Adolescents developing an eating disorder may also become more involved in the kitchen to ensure that their food is cooked with minimal calories, and adolescents who are specifically developing bulimia may also show signs of binge eating and purging. Parents may notice large plates of food disappear overnight, their child going to the bathroom after every meal or signs of vomit on the toilet seat. However, these symptoms can be difficult to spot because sufferers tend to be invested in hiding their disease.
“I think one of the dangers about anorexia and bulimia nervosa is that the onset is often very insidious,” Le Grange said. “So a lot of symptoms are sort of creeping in, and the parents are not aware, and we’re often not very good about spotting troubles in our own families because it’s too close to home to acknowledge it.” Eating disorders can also be difficult for families to recognize or acknowledge when they are falsely viewed as something a child chooses, rather than a mental disorder. “I think it’s always very difficult for parents. They say, ‘But [my daughter is] such a good girl,’ and no one disagrees that she’s a very good girl,” Le Grange said. “The illness doesn’t make her a bad person, it just gets [her] to do things [she] otherwise wouldn’t do.”
It is a common misconception that eating disorders are choices rather than diseases. “The lay public, and even professionals, will very seldom blame someone who has cancer, even someone whose cancer is directly related to their smoking. I’ve never heard people say, ‘You brought this on yourself,’ whereas you hear that all the time with eating disorders,” Le Grange said. “[They] didn’t cause the illness. [They] do strange things, but it’s not because [they’re] a bad person…You don’t blame someone who has schizophrenia when they hear voices, and you don’t [blame] someone who has an eating disorder when they buy laxatives… It often happens in eating disorders that people sort of tap dance around anorexia.”
Jenna has felt this stigmatization. “I think that people should be more aware of not making comments [about eating disorders] because I hear that a lot. [People] make fun of girls who don’t eat a lot,” Jenna said. “You should try to help and have some sympathy for them because clearly they are going through a hard time.”
Another aspect of the stigmatization that people with eating disorders face is a lack of understanding regarding the severity of the disease. Anorexia and bulimia both have high rates of fatality and are extremely serious diseases. Le Grange said, “The mortality rate for anorexia is primarily explained by complications of starvation, usually heart failure, or people become chronically unwell, [so they] become very depressed and commit suicide.”
There are various causes of death that result from bulimia. “Every time that [someone] throws up, [they lose] important electrolytes and other body chemicals that are in the content of the vomit… [they] are ridding [their] body of these important chemicals. So [they], for instance, drop [their] potassium level, and a very low potassium level can lead to death,” Le Grange said. “Another [cause of death] would be if [they] induce vomiting [they] put stress on [their] esophagus. It’s a pipe and [if they] jerk the pipe it can only last that long before [they] actually rupture [their] esophagus, and [they] can bleed to death.”
Although the disease is extremely dangerous, it is possible to recover fully, especially if treatment begins early. “You really need specialist care and it needs to be intensive and quick,” Le Grange said. “If you recognize the illness early on, and you get good treatment early on, you don’t have to go through adolescent and young adulthood being unwell.”
However, people who have had eating disorders are vulnerable to relapse. These relapses can be caused by a variety of factors. Relapses are often associated with periods of high stress, according to Le Grange. “If your way of coping with stress [is that when your] anxiety goes up, you stop eating because it somehow temporarily makes you feel better,” he said.
Jenna’s recovery process has been difficult for her family and friends. “My relationship with my parents definitely changed. They don’t really trust me as much as they would have if I didn’t go through this,” she said. “It’s put a toll on [my friends]. It’s a very selfish disorder; you don’t really care about anyone else around you.”
Jenna’s good friends have been instrumental in the recovery process. “I have a best friend and if I’m not doing [well], she can tell,” Jenna said. “She’ll be like, ‘You’re not doing good. You look horrible,’ and it’s not trying to be mean, it’s just being like, ‘Dude, you need to start eating more. You need to start taking care of yourself, because you do not look good.’… It actually helps.” However, in many cases, comments about appearance can trigger self-destructive behavior such as restricting or purging. “People try to be nice and give me compliments but I can’t accept the compliments for what they are,” Jenna said. “I twist them in my mind and if people comment on what I look like and it’s positive, I always have self-confidence issues with what really matters. I get so many comments on how I look. It’s like, well, maybe how I look really does matter. That’s really not what I’m trying to focus on.”
Jenna, like many other people with eating disorders, would equate losing weight with feeling better. This flawed logic turned into a never-ending cycle of weight loss where Jenna was never satisfied with her weight. “The stupid thing is, I always say, ‘I feel so big. I would feel better if I lost weight.’… [but] I could be at a very, very low weight and I’d still feel huge. Then [I] will [think] ‘I need to keep losing weight, I need to keep losing weight…’”
Le Grange said that this mentality is common for sufferers of eating disorders. “It’s very paradoxical [to think that] you need to be thin to be good… The more weight you lose, the more you think you need to lose in order to feel good about yourself. You never feel good about yourself,” he said, adding that this mentality needs to be reversed so that the patient can begin the recovery process. “Having this illness doesn’t allow [the sufferer] to think rationally about this aspect of their life. Most of our patients are super smart kids, and they can discuss anything under the sun, from the recession in 2008 to national politics and so on. But when it comes to how much you need to eat to be healthy, that rationality goes out the window.”
One reason that the patient is unable to think rationally is that without sufficient food the brain doesn’t function properly. “Without weight gain, you don’t have enough glucose in your brain. You’re simply not going to be able to think in a way that’s going to allow you to understand how serious your illness is,” Le Grange said. Jenna experienced this kind of confusion during her treatment. Once she gained enough weight to have normal brain function, she realized how severe her disease was. “When I finally got my thinking a little bit better, I looked in the mirror one day and [realized], ‘I’m too skinny.’” Jenna said this realization was surprising. “Before, I was yelling at everyone, saying ‘I’m so fat, why are you making me gain weight?’ and [then] I looked in the mirror like, ‘I can see all my bones.’”
While the causes of eating disorders are unclear, people with certain personality traits are more likely to develop eating disorders. “What is very frustrating about eating disorders is that we don’t know what the causes are. We really don’t,” Le Grange said. “But there are some suggestions of what might be responsible for people developing anorexia. Usually people are born with a certain constellation of genes, like perfectionism and [fastidiousness] and [being] hard working. But there are tons of perfectionists out there who don’t develop anorexia. So that alone obviously cannot cause anorexia.”
Le Grange cites genetics as a reason some adolescents develop eating disorders. “There are psychiatric illnesses where there is an established genetic link, and anorexia and bulimia are two of them,” Le Grange said. “The inheritability is quite high. If you have a first-degree relative with an eating disorder then you have at least a 50 percent chance that you could develop an eating disorder as well.” Children who develop eating disorders generally develop them during puberty. Many doctors have theorized about the reasons for this phenomenon, citing peer pressure, hormonal changes and social stressors as causes for the disease, but an absolute conclusion has not been reached.
“[Puberty] seems to be another critical piece of the puzzle,” Le Grange said. “Of course, there’s no coincidence that 90 percent of people who develop anorexia develop it right around the time of puberty or early adolescence. If you are that vulnerable kid that developed or inherited that constellation of traits… and you get to adolescence and there’s this whole rapid change in the way your body works… that’s the second important piece that falls into place.”
This phenomenon was critical to the progression of Jenna’s eating disorder. Going through puberty before some of her peers led to issues with body image. “Before my eating disorder, I was a total perfectionist with my grades and sports. But then it got to… the way I looked, making sure I didn’t eat,” Jenna said. “I was always really shy and self conscious and… I developed earlier so I was taller than all the girls and everyone would come up to me and say, ‘Oh my god, you look so big.’ They meant being tall, but I took that as, ‘Oh my god, [Jenna], you’re so big and fat,’ which I wasn’t at all… I was fit, and I probably looked more like a woman compared to other sixth grade girls but I definitely wasn’t big, now that I look back on it.”
Jenna’s disorder has gone through various stages. “I’ve been in and out of being better or worse for six years. I missed basically all of middle school, not only because I wasn’t there physically, but I wasn’t there mentally, and even if I was at school I couldn’t focus….I tried to hide it from everyone, but I realized as it got worse and worse I didn’t have a lot of friends. I mean, that’s all I was thinking about and people don’t really want to be around someone who’s brain-dead,” Jenna said. “I couldn’t have a conversation and…I just didn’t eat. I was lost most of the time, thinking about things that didn’t even make sense, just thinking about food all the time, thinking about how I [wasn’t] going to eat [that day].”
Understanding these disorders is the first step to getting rid of the stigmas that currently surround them, as well as creating a culture that encourages and aids recovery. Le Grange stressed the importance of informing people “about the seriousness of this illness, the importance of spotting the early signs, making sure you respond to them as a parent and [making] sure your kid gets into treatment fairly quickly.”