My recovery from anorexia has not been linear, and I know I am not alone in this experience. Research indicates 31% of patients with anorexia relapse after treatment, with the risk for relapse being highest within the first two years after discharge. The likelihood that I am not alone in my many relapses doesn’t console me though. Anorexia is the most lethal mental illness. Because of its physiological and psychological toll, each relapse has the potential to be a dangerous dance with death. I don’t wish this long, difficult journey to recovery for anyone struggling with an eating disorder. But I know that while my recovery has been marked by many falls, it has also been marked by getting back up and moving forward again. I would like to offer three insights I have gained through my experiences of relapse that have helped me to build the stronger recovery that I am now living:
- Reaching and maintaining a weight that is right for my unique body is necessary for full recovery.
When I was first diagnosed with anorexia at age 16, I was given a target weight that landed me in the lowest end of the “healthy” BMI range. I put healthy in quotes because at that weight my mind was still very sick. Sure, I was warmer, my periods returned, and my vitals were much improved, but my mind was consumed by thoughts of food, exercise, and weight. I was constantly trying to get away with eating less and moving more, and with the scale out of the house, weigh-ins with my therapist each week became a way for me to make sure I did not gain any more weight. Unsurprisingly, within a year of starting treatment, I experienced a relapse and needed a higher level of care. At the treatment center I ended up at, I was given a new target weight. To the utter terror of my eating disorder, it was significantly higher than my original target weight. However, with the consistent, caring, but very firm support of my mom and treatment team, I made it to that terrifying weight and was surprised to find that as my weight went up, the voice of anorexia quieted down. I still needed the uncompromising full meal support of my mom for many months after discharge, but with full nutrition day after day, the urge to restrict lessened; and, though it was hard to admit, with time, the desire to eat returned.
About a year later, the COVID-19 pandemic hit, and weight checks stopped. At the same time, I started increasing the amount of exercise I was doing. Unintentionally, I slipped into energy deficit as the amount of energy I was taking in did not meet the amount I was expending. When I started at a new college a few months later, the weight loss, coupled with the stress of the transition, put me in a vulnerable place. It wasn’t long before restriction became more severe, and my entire focus of attention was consumed by the rules of the eating disorder. Not wanting to put the semester on hold, I was able to transition to remote learning, which allowed me to do classes from home and have my mom’s support for meals, rest, and weight restoration. It was during my recovery from this relapse that I learned about the biology of anorexia and began to understand the dangers of energy deficit (intentional or unintentional) for someone genetically predisposed to anorexia.
I was able to see that for me, and for other people predisposed to restrictive eating disorders, negative energy balance is a trap. At first it feels good. When I started exercising more and eating less, my anxious mind became more focused, my emotions less turbulent. I felt calm and in control. Negative thoughts about my body were quieter. But the longer I stayed in the energy deficit that was originally triggered by the change in my exercise routine, the harder it was to get out and the more vulnerable I became to full blown relapse. Rules became more rigid, and the guilt unbearable if those rules were broken. During weight restoration after this relapse, I gradually began to see the difference between my mind in energy deficit and my mind in energy balance. I recognized that with consistent, full nutrition day after day, the compulsion towards restriction lessened. I realized that in energy balance, I was freer to think about much more meaningful and interesting things in life than food, weight, and exercise. Negative body image thoughts were still incredibly loud and difficult, but I started to consider that maybe having a mind freed from constant preoccupation with food, exercise, and weight was worth more than my appearance.
“Food is medicine” is a mantra I repeatedly heard from my mom and FBT therapist during the weight restoration stage of recovery, but I realize now that for someone with a history of anorexia, it should be a mantra for life. Even after weight restoration, food is still medicine. Thanks to my experiences of relapse, I now know that eating consistently (every 2-4 hours) and adequately (3 meals and 2-3 snacks minimum) daily is not optional. It is essential to keep me from slipping back into energy deficit and back into the grips of anorexia. When I feel guilty about eating more than other people, I tell myself that this seemingly large quantity of food and often annoyingly structured way of eating is essential for safeguarding my freedom from an illness that will steal my attention, ability to be present with others, physical health, and joy. As I have progressed in my recovery, food has become more than just medicine. Sometimes it is a source of fuel for weightlifting, a way to connect with other people, and even a source of comfort and joy. However, I now know that because I have a history of anorexia, food will always first and foremost be medicine.
I wish I could say that my recovery has been strong since learning about the danger of energy deficit, but it took experiencing two more partial relapses or “lapses” to recognize that not only energy balance, but more weight, was needed to move away from the edge of illness into a stronger recovery. Both lapses happened at the start of new semesters in college when negative emotions were strong and the slip into energy deficit all too easy. After the second lapse, I reconnected with an eating disorders dietician I had worked with previously. She shared research on set point theory and brain healing to help me to see that my weight needed to be higher. I was still experiencing a lot of preoccupation with food and exercise, devoting a lot of mental and physical energy to keeping myself at a weight that maybe my body didn’t want to be at. My dietitian stressed that I needed to take into account that I was four years older than when I was first given my target range. I also needed to consider the number of relapses/lapses I had experienced since starting treatment and give my brain the best chance at full healing from the damage caused by anorexia. Research suggests that with short term weight restoration, deficits in brain gray matter volume begin to improve, but that full brain healing takes much longer. I began to consider that maybe what my body needed wasn’t just an adequate amount of food, but (scary!) more weight to heal and move further away from that edge of illness and more securely into a place of freedom. Around this time, I also read Emily Boring’s exceptional article on higher target weights on the F.E.A.S.T blog. Her lived experience gave me the courage and hope I needed to gain more weight.
So, I did. And I can say that paradoxically, I became freer from preoccupation with weight and food when I allowed my weight to climb higher. I am still struggling to accept how my body looks here, but I know that my brain is much healthier at this weight. I can eat and move on with my life much more easily than even just a handful of pounds lower, and I don’t constantly have thoughts of food and weight and exercise on my mind. I still tend towards rigidity in food and exercise, but I know I have moved further from the edge of illness than I ever have before, which is both scary and wonderful at the same time. Reaching and maintaining a higher weight and staying in consistent energy balance have helped me get to this point, but I know weight and nutrition are not the only factors implicated in my relapses and recovery. This leads to my second insight: the importance of addressing comorbidities.
- Addressing comorbidities is essential for the prevention of the recovery-relapse cycle.
I can remember the first day of gym class in fourth grade. It is time to change from our school shoes into gym shoes and I’m at my cubby. I pull out the pearly white gym shoes I had gotten the day before at Target. I put them on and tie up the laces. But the shoes are too big. They make my feet stand out. They aren’t right. I’m not right. I feel a tightening in my chest and stomach. Leaving my spot in line, I go to my teacher. “I think my shoes are too big,” I say. She tells me they will work fine for today and to get back in line. The lump in my throat gets harder to swallow as we walk to the gym. In class, I sit in my spot and stare at my shoes, unable to focus on anything else. Finally, when it is time to run laps around the gym to warmup, I go to my gym teacher and burst into tears. But as I try to explain that my shoes are too big, my nose starts gushing blood. I spent the rest of gym class that day in the nurse’s office, trying to hide my gym shoes under my chair as I held a tissue to my nose. Since then, I’ve learned nosebleeds can be triggered by high levels of stress.
Anxiety has been a companion of mine from a very young age. In childhood, it often manifested in ways similar to the case of my size-too-big gym shoes—when I felt that I had done something wrong and needed it fixed right away. It would also manifest in fears about something terrible happening to me, like being kidnapped, or feeling unsafe in situations where there was an element of uncertainty (even if there was no real danger involved), such as when I was around adults who were drinking alcohol. Like many young girls, during middle school my anxious thoughts centered around my appearance. I can remember feeling that the puberty weight added to my stomach and thighs the summer before seventh grade was “wrong.” I started running cross country and track in middle school, and when I compared myself to the runners I saw in Runner’s World magazines, I also felt wrong. I scrutinized images of female distance runners. Unlike these women, my legs were stubby, my breasts too big. My body wasn’t right.
Research indicates that the comorbidity rate of eating disorders with other psychiatric disorders is very high. Anxiety disorders in particular have been identified as vulnerability factors for the development of eating disorders, commonly presenting prior to the onset of an eating disorder. For me, anxiety and depression have been two sides of the same coin. Looking back, I can see that both contributed to the development and maintenance of my eating disorder and played a central role in my relapses. Addressing anxiety and depression with the help of medication has been a very important part of my recovery and relapse prevention. In eating disorder recovery, food is medicine first and foremost. Psychiatric medication is little to no help to a malnourished brain. In addition to full nutrition, though, for me, addressing comorbidities with medication has helped to lessen the pull towards restriction and exercise compulsion by lessening the intensity of anxiety and intrusive thoughts that I experience each day.
With a well-nourished brain and body, therapy has also helped me grow stronger in my recovery by helping me to gain insight. I am now aware that when I feel vulnerable, anxious, criticized, lonely, stupid, ugly, and uncertain, the pull towards eating disorder behaviors is stronger. At the start of each of my relapses, restriction soothed my anxiety. The rules of the eating disorder provided a detailed oriented focus to my day-to-day existence, helping me to cope with uncertainty and feelings of inadequacy. The world simplified to eating less, losing more weight, following a regimented schedule, and becoming frailer exteriorly to match the inner fragility I was experiencing. I think it’s important not to over-psychologize eating disorders, but while still taking into account the biological nature of anorexia, it has also been helpful for me to consider how the illness has helped me to get needs met that were not being met in healthy ways during different times in my life, such as the need to be seen, attended to, cared for, the need to be unique and confident that I was good at something, the need to set and reach goals. Now I am at a place where I can ask myself how I can get those needs met in healthy ways. I tell myself that restriction is not an option anymore, no matter how bad I feel about myself or my situation, and that I do not need anorexia to be seen and valued.
This brings me to my third insight. Along with full nutrition and weight restoration, medication, and therapy, I needed what I call “life tethers” to build a strong and lasting recovery. These tethers have expanded my world beyond the bubbles of illness and eating disorder recovery. They have helped me to get needs met in healthy ways and to hold fast to life, in all its beauty and complexity, when I feel the pull towards anorexia and despair.
- “Life tethers” sustain lasting recovery by making my world much bigger than the narrow confines of anorexia.
Throughout my recovery, there have been periods of time when I have lived in what my therapist and I call “the recovery bubble.” When I am ill with anorexia, my focus is hijacked by eating disorder rules and fears. In the recovery bubble, on the other hand, my focus is narrowed down to challenging those rules and fears, to “fighting the eating disorder.” Being in the recovery bubble is a far better place than being ill, and it has been essential at different points in my recovery journey. When I missed months of school for treatment during my senior year of high school, the message repeated to me was that my education could wait. Nothing was more important than recovery from this illness. During this critical time, it was helpful to frame recovery as a fight for my life, a battle for freedom from the dark, destructive voice of anorexia. When I graduated from high school, I stayed home for a year, attended community college, and essentially lived in a recovery bubble. My mom supported me through almost every meal, and we had weekly sessions with my therapist. I watched Tabitha Farrar YouTube videos and read eating disorder recovery blogs. In the recovery bubble, my focus expanded beyond the confines of anorexia, but most of my thoughts still revolved around the world of eating disorder recovery. I held onto the eating disorder world, not wanting to let go of what made me “special.”
The recovery bubble provided me with a sense of safety. The world outside was uncertain and I felt inadequate in the face of it. In the recovery bubble, however, the most important thing in the world was eating and challenging the voice of anorexia, and I had my mom, therapist, and dietician supporting me in that fight. I think recovery bubbles can be valuable, especially in the beginning stages of recovery. Eating disorders are very serious illnesses and should be treated as such. When someone is in the grips of an eating disorder, the most important thing in the world is recovery. Ultimately, though, I am grateful to say that through lots of perseverance, I am now at a place where I can see that life is so much bigger than the worlds of both eating disorder illness and recovery. This doesn’t mean I deny my history. I know that I need to be on top of my nutrition and cautious of my tendency to slip into rigid routines with food and exercise. But I now have values outside the eating disorder. I have “life tethers” that keep me grounded, helping me to ride the wave of emotions that in the past would have sent me spiraling back to anorexia.
The first of these tethers is relationships. For a long time, I could not recover for myself. So, I chose recovery for my family. I can remember my mom, with tears in her eyes, telling me that she needs me to get well. This has been a steadying mantra of mine in recovery—My family needs me to be well. I would not be where I am today without the support of my family. A strong support system, including my family, therapist, dietician, and psychiatrist/physician, has been essential for my recovery. For years before starting treatment, I lived alone in my mind with the mean voice of anorexia. Looking back on the ways the eating disorder severed relationships and pulled me away from my family and friends, it can be hard to be compassionate with myself. But I am so grateful recovery has given me the freedom to reconnect and form new relationships. This has required immense perseverance, as I still struggle with social anxiety and inflexibility, but I am now committed to valuing relationships above the eating disorder. Often this looks like eating the ice cream my sister made for dessert or skipping a planned workout because a friend is visiting. Relationships keep me tethered to life when it is difficult to choose recovery for myself.
Another life tether has been exploring and setting goals in areas of life outside of food and exercise. The goals of anorexia are often concrete and involve a regimented daily schedule. In recovery, it can be very difficult and disorienting to let go of the order anorexia provides, destructive as it may be. I have found that setting goals in hobbies, academics, and work has helped me to feel a sense of control and order in my life, without relying on the eating disorder. At different points in my recovery, when my self-esteem was very low, I needed encouragement and support to explore life outside the recovery bubble. But with courage and perseverance, I am now at a place where I want to act in accord with what I value rather than what the eating disorder values. I can choose to read a good novel in my free time rather than feel I should do some sort of movement. I try to write every day, because writing helps me to order the chaos I feel within and without. Even small things, like making my bed each morning can help me to feel I have some semblance of control when life is chaotic. And when I enter uncertain and new situations, like the start of a new semester or summer job, I try to apply a growth mindset, aiming not at flawless perfection, but growth through effort and perseverance. This gives me the freedom to make mistakes and view criticism as an opportunity to learn and mature in what I value, not as evidence of my inadequacy in the face of life.
Lastly, faith in God has been my strongest tether to life in my recovery. Faith frees me to be by speaking to me of my inestimable worth, of the value of my life regardless of what I look like or what I accomplish. But it also invites me to become, to participate in something much larger than myself, to seek to do good in the world, and to hope and trust that hard as it is, life is good and worth living to the fullest, without anorexia.
I feel there is much more to say, as I know there are many more factors involved in relapse and recovery. But speaking from my own experience, these three factors—reaching and maintaining a higher weight, addressing comorbidities, and identifying and pursuing values outside of the eating disorder—have helped me to build the stronger recovery that I am now living. I know that this would not have been possible without the support of my family, so I want to encourage parents not to give up, no matter how bumpy the road to recovery may be. Relapses can be learned from, and insights gained. But it is my deepest hope that while relapse may be common, through sharing our stories and learning from research in the field, it does not have to be inevitable.
Such an important message. I hope the author has been evaluated for “just so” or “just right” OCD. What she describes in #2 sounds very much like it.
This is just unbelievably similar to my daughters experience and words. Thank you so much for sharing them
This article came at the exact time I needed it and I will share it with my daughter who is struggling with gaining back sone weight.