You’re Never ‘Cured’ of an Eating Disorder
Until doctors and researchers can decide what qualifies as ‘recovery’ from an eating disorder, patients continue to exist in a strange limbo.
There are 14 stairs in front of me. Each one seems a mile high, and the entire flight an insurmountable obstacle. I give myself a pep talk. You’ve done 100 mile bike rides. This isn’t Mount Everest.
I have lived the last two months on the ground floor. After talking to my physician and my physical therapist, we all agree: I am finally ready to go upstairs.
With a crutch tucked into my right armpit and my left arm draped over my husband’s shoulders, I once again survey my carpeted nemesis from the bottom landing. I have chickened out twice, and I am determined not to back down. I lift my left leg one inch, then another. A wall of pain slams into me and steals my breath. I slump against my husband, gasping.
“You okay?” he asks. I lie and nod my head yes while wiping the tears on my gray fleece sleeve.
I try my right leg. I can lift it onto the first step (progress!) but it is not strong enough to push me off the ground and propel me up. I cry harder. Upstairs is a hot shower and a good book and a soft bed and I am stuck downstairs and I cannot get up and I am frustrated and everything hurts. I cry harder still.
My husband rubs my back and makes soothing noises and tells me everything is going to be okay. Gripped by a pain that makes both legs feel like they are simultaneously being dismembered and set alight, I don’t even have the energy to nod.
I have always had a contentious relationship with my legs. I inherited the Arnold Family Thunder ThighsTM, which was a source of frequent teasing and distress for me as a child. Our relationship did not improve as I entered college and developed a raging eating disorder. The more weight I lost, the larger my body seemed to get. One bite too many, and I could look down and practically see my thighs expanding before my eyes. As I forced my exhausted body to exercise, I yelled at my legs like a drill sergeant, demanding five more minutes or one more set.
Not long after I started cutting back on food and increasing my exercising, my periods stopped. Far from being worried, I was thrilled. No more tampons! No more mood swings! Not long after I was finally diagnosed, my doctor ordered a bone density scan. The results were awful: marked osteoporosis in the spine, hip, and femur. I was 21.
Low body weight and missed periods are hell on your bones. Without adequate fat on your body and in your diet, your body doesn’t make the hormones needed to lay down new bone. Instead of being strong and resilient, bones become weak and brittle. My doctor put me on oral contraceptives to induce a period, figuring it would help build bone. It didn’t. Later studies showed that only gaining weight and the return of natural menstruation help improve bone density.
At 24, I slipped on the ice outside of my Michigan apartment. It was the type of fall that should have resulted in bruises and maybe a sprained ankle. Instead, I ended up shattering three bones in my ankle, requiring surgery and months of rehab. My surgeon told me my bones were so soft he could barely install the screws. I was briefly scared into eating regularly, but all too soon, the fears fade and my old habits return.
My eating disorder continued for more than a decade before I finally entered recovery. I challenged myself to eat foods I haven’t touched since high school. I gained weight. I gave up my gym membership in favor of hiking and cycling. I repaired my relationship with my parents. I quit my job and started freelancing. Surprisingly, it all came together. Although I was not free of eating disorder thoughts, I figured the worst of it was behind me.
I was wrong.
My bike ride that mid-October day starts like so many others. Going at a reasonable clip, my husband and I travel the trails and side roads near our house. The weather is cool and I decide to try my new thermal leggings, not knowing they will be cut off in the hospital a few short hours later. After stopping at the second to last intersection before arriving home just as the sun slips below the horizon, I prepare to start pedaling the moment the light turns green. I push down on the pedal with my right leg and instead of propelling myself forward, I topple over sideways. I hear my leg snap before I hit the ground.
For the next 10 minutes, all I can do is scream. My husband, bewildered and shaken, calls 911. A car stops to check on us. A woman about my age gets out. Pushing her dark glasses up on her nose, she squats down in the grass beside me, takes my hand, and begins asking me a bunch of questions about my ride, my racing bike, and how I fell. At first, I am annoyed because answering these questions takes so much effort. But the questions occupy my mind until the ambulance arrives.
After answering the usual questions (yes, I was wearing a helmet, no I didn’t hit my head, no I just sort of fell), the paramedics load me into the ambulance. The jostling leads me to resume screaming. When the paramedic radios the hospital to let the Emergency Room know we are coming, he mentions a young woman with a possible fracture to the lower right leg.
“It’s broken,” I correct him.
“Well, we don’t know for sure,” he said.
“It’s broken. I know it is. I heard it snap,” I say.
He drops the question.
An x-ray two hours later confirms my hunch: my tibia (the big bone behind the shin) is snapped clean in two. The fibula is also broken, nearer the knee.
As I sign the forms to be admitted to have surgery the next day, I ask my husband the date. I scribble the numbers on the paper, and then I look up with a start. We were married exactly one month previously.
“Happy anniversary,” he says, rubbing my hand.
Recovery from a long-term eating disorder is a bit of a statistical anomaly. It happens, of course, but the less time a person is sick, the better their chances of recovery. As I got better, I also got curious about what happened to other patients like me. What happens to us after the eating disorder? Are we scarred for life? And what about our physical bodies?
I asked my therapist and other eating disorder experts. No one had any answers. Usually, once people improve, they stop seeing therapists and doctors for their condition. The longer someone stays well, the lower their chance of relapsing, although that possibility never becomes zero. But it’s not clear that “well” for someone with an eating disorder is exactly the same as for someone who had never been sick. One 2013 study in the journal Quality of Life Research showed that quality of life was significantly lower in individuals with a history of anorexia, even after they had recovered. Other research is more optimistic, showing that women who had both physically and mentally recovered from an eating disorder looked nearly identical to women who had never been ill.
The problem is that no one has yet defined eating disorder recovery. We can’t study recovery until we actually define what it is. As I went spelunking through the research literature, I found a huge variation in definitions. Some studies define recovery as having no eating disorder symptoms, such as fasting for more than 8 hours during the day, binge eating, or purging, for two weeks—a pretty low bar, in my opinion. Other studies require symptom abstinence for one year. Not surprisingly, rates for recovery vary enormously, from as low as three percent to upwards of 75 percent. If researchers can’t define who is in recovery and who isn’t, then there’s no way to figure out what happens after recovery.
Take bone health. Many anorexia patients report reduced bone density after diagnosis, and research has shown that the best way to improve bone density in people with anorexia is to restore weight and (in females) menstruation. This is great. They also found that, while bone density does improve with recovery, especially with adolescents and young adults, it never quite returns to normal. This leaves people with a history of anorexia and reduced bone density like me at high risk for fractures. I am a walking embodiment of this risk.
The question is what can I do about it? Here the research literature is silent. Most of the work on improving bone density in women with osteopenia or osteoporosis is done in post-menopausal women or on individuals with active eating disorders. I am neither. I take calcium and vitamin D supplements, but prescription medications are generally only for women in menopause. Regular exercise is also known to help, as is not smoking, but I’ve already ticked those boxes. I am hoping that strength training will do the trick—at least it can’t hurt.
Many of my friends are in a similar position: we consider ourselves in recovery from an eating disorder (or at least vastly improved) but we are walking in an area of physical and mental health where no one has any advice. What happens when someone with an eating disorder history is diagnosed with high cholesterol? A weight loss diet carries a horrifically high risk of relapse, as does an overly rigorous exercise regime, the standard prescriptions people get from their physicians. Are they better off skipping right to medications? Or not treating at all? No one knows. We are, essentially, an army of guinea pigs millions strong.
A three-inch long incision down the front of my knee and four more tiny slices on the sides of my knee and ankle, and my leg is repaired. The doctor tells me I can walk on it right away, “as comfort allows.” Comfort does not allow. I return home after several days in the hospital and start thrice weekly physical therapy. As my injured leg improves, my left leg starts aching, then throbbing, near my hip. My doctor says it’s a possible stress fracture in my femur, due to the extra work my left leg has to do and my bad bones.
And thus I end up at the bottom of the stairs, about one month after my injury and two months after my wedding. After my crying spell stopped, I gritted my teeth, tucked my crutch under my right arm, and turned to my husband. “Let’s do this.”
With him lifting me upwards, we make it up the stairs. It probably only took a minute or two, although it felt like hours.
This is not the marriage I expected. I knew there would be good times and bad, sickness and health, broken dishwashers and giant cockroaches in the bathroom. I just didn’t expect it all in the first month. I cannot erase the guilt I feel, that the vestiges of my eating disorder are somehow an unwanted shadowy third person in the house that comes and goes as it pleases. My husband knew of my history long before we got married, knew there was always a chance that my illness would return or my health would once again be compromised.
I suppose that, near the end of an essay, I’m supposed to write about how my marriage is stronger than ever! And we make a great team! All of which is very true, although I’m not sure there was anything wrong with my marriage to begin with. I don’t know if my eating disorder will return or the side effects of more than a decade spent starving, over-exercising, and purging will once again catch up with me. But we both know the warning signs and know what to do if that should happen.
I know that one day in the near (ish) future, we will return to our usual hikes and bike rides. Until then, we will hike the stairs together, one carpeted step at a time.