I have decided to share some case histories from my files for several reasons: to introduce the secret language of eating disorders to those who do not speak it, to lay to rest the image of only “one kind of family” and “one kind of person” who suffers from this illness called anorexia nervosa and finally, to tell readers of my blog about some pretty wonderful kids.
I have been seeing patients with eating disorders for a very long time. Some days it seems longer than others. At our clinic we have seen nearly two thousand patients between the ages of 4 years and 24 years. So if you think you recognize a patient in these case histories—even yourself—you probably don’t. Many stories share similar features. We are all human, we resemble one another far more than not.
Lorna
Lorna was only 11 when she became aware of her urges to restrict her food intake. She told us years later that she began her first attempts at purging then, too, although that certainly would be publishable were we able to substantiate it. Purging is rare in very young patients with AN (under 13). She also told us—many years later—that she felt that the purging was a response to her chaotic family life. And who knows? We don’t know what causes eating disorders, so we will take her guess at face value and tell you that her father was physically and emotionally abusive to her mother. He also had bulimia. When I first met him, when his daughter was 12, he told me he was “terrified that we (doctors) would take away his own eating disorder.” He loved his daughter, but he loved his eating disorder as well.
We began Lorna’s pediatric treatment so long ago that Maudsley and similar protocols lay far in the future. We involved her family, of course, because that is what we have always done, even though we were aware that her father was himself affected and that her mother constantly dieted to lose the weight her husband insisted she must “if she loved him”. They were the only family she had.
From the age of 12 to the age of 18 Lorna began a long, involved trip through one treatment program after another, usually culminating in either her insurance benefits running out or her parents pulling her out of treatment, including ours—twice—because it was “too demanding of the parents.” Sometime during that time her parents separated and Lorna’s mother was able to begin to repair her own life. But not to stop dieting. Lorna spent all those years going from place to place, from inpatient to residential to outpatient, back to inpatient, back to residential, on to drug and alcohol related residential, back to outpatient. She saw psychiatrists, therapists, family therapists, massage therapists, doctors, etc. etc. Once she landed on an adult service she was placed on Cymbalta, Seroquel, Neurontin and Trazadone, all at once, and all with virtually no follow-up. She was re-fed with and without regard to re-feeding syndrome, depending on the experience of the physicians and where she was at the time. It is amazing that some of the treatments didn’t kill her.
Did I mention how intelligent this girl was? She was lovely and delicately featured, spoke with a soft voice and was whip smart. She eventually landed a full-ride scholarship to a fine university, despite the extremely sketchy formal schooling caused by her repeated absences due to her illness. Much of the time Lorna was grossly underweight and had thoroughly deranged electrolytes and constant chest pain. Once she crossed the legal threshold of 18 years, her parents obtained custodial guardianship, but it was a fiction, as they had neither the energy nor desire to “make her do anything she didn’t want to.” This much Lorna knew, of course. By age 15 she was engaging in self-mutilation.
Enter Kartini Clinic (again). Her mother called to beg me to take her back as a patient. She was at residential treatment, her mother said, and doing pretty well, but preferred to come to us on completion as it was near their home. I agreed to take a look…good grief, what a look. I nearly screamed when I entered the exam room: sitting on the exam table was a skeleton staring at me with solemn, intelligent, tearful eyes. Her little body weighed 64 pounds (29 kg), she was a dry skeleton covered with a thin stretch of skin.
It takes a lot to shake me up. Little Lorna did it. She had, it appeared, gone out against medical advice (but with parental consent) from the latest residential program. I agreed to help her, but I told her parents this would be the last time and that if they removed her (again) from our care they would have to find another doctor. Lorna’s mother—herself a sweet, soft-spoken woman—agreed.
We hospitalized Lorna for a long time. It took a long time to achieve a modicum of medical stability and abstinence from purging. All the nurses and young resident doctors fell in love with Lorna. Once her brain came back on line, she was engaging, talented, artistic, kind and so very smart. We loved her too, but we felt as if we were holding our breath every day. After weeks and weeks we were able to transfer her to Kartini’s day treatment program where she was with us during the day and went home at night. This is where the first cracks appeared, despite our intensive parental education efforts. Mom gave into Lorna’s pleading and bought her some sweets. Lorna immediately began a cycle of eating sweets, feeling bad, and then purging. We pleaded with Mom to resist the temptation and help Lorna to do so. Lorna’s mom had started a new life, had a new relationship and it was all she could do to meet the physical and time demands of family-based treatment; she had no energy to spare to resist her daughter’s pleading and eating disorder rages.
Despite these setbacks, we were able to get Lorna’s weight to 122 pounds (55.5 kg); she was 64 inches tall (162.6 cm). She began menstruating, she smiled and laughed and made college plans. It was at this point that her parents told us that they “agreed with her that we had made her too fat” and were going to allow her to leave treatment with us because we “would not let her lose the ten pounds she ought to.” We begged, we pleaded, but they let her withdraw.
A few months later Lorna weighed 62 pounds and her kidneys began to fail. She wanted me to “sponsor” her for admission to hospice to die, which I refused to do. When one of our therapists visited her, she asked to speak to her privately. When they were alone, Lorna asked, in a weak whisper : “Just tell me one thing — do I look fat to you?”
I am not going to tell the end of this story since it might make Lorna recognizable to her relatives. It is a tale of woe that leaves everyone feeling tainted. It asks as many questions as it answers. What does it ask you, dear reader?
