I wish that my son could tell his own story, but he can’t, so I will try for him, perhaps to give courage to others who are in the grip of the illness that cut his life short at the age of 24.
“It’s odd,” I mentioned to my then-18-year-old’s therapist. “Nathaniel shaves with the lights out in the bathroom and the door propped open to let in a little light from the hallway.” The therapist’s eyes widened with sudden understanding and alarm.
“It’s BDD — Body Dysmorphic Disorder,” she blurted out.
The moment plays in slow motion in my head, locked in my memory. BDD? Never heard of it. I had no idea what she was talking about, but it did not sound good.
As soon as we got home, I ordered Katharine Phillips’ seminal book about BDD, “The Broken Mirror,” and read it in one sitting. When I finished, I knew this was the disorder Nathaniel had been suffering from since age 11 when he first became anxious, and that we were in for a rough ride. It had already been hard, and it got harder — much harder.
Our six-foot four, handsome, intelligent, and incredibly funny son was wrestling with an inner demon that I could not fathom and could hardly bear living with. If it was torture for us, his family, it was unmitigated hell for him. He hated his appearance and was convinced that his skin was defective — “hideous, disgusting” were the words he used. Yet he had a beautiful complexion, and by anyone’s standard, he was handsome. A shaving nick or a minor blemish would keep him indoors for days, or he would cover them up with tiny pieces of bandage so that he could bear to go out. The focus was mostly his skin, but when he was younger, the worries had shifted: he thought the roll of flesh on his tummy was too pronounced (“But you are a growing boy!” I would say), the shadows under his eyes were too dark (“But everyone has them!”), his hair had to be just so (“Do you need all that gel?”). He compared himself with his younger sister, wanted to be her weight and keep up with her level of activity to satisfy an inner command. He was victimized by narratives in his head that dictated he cover up blemishes, exercise compulsively, or compete with his beloved sister. There is no logic to BDD, so no logical argument or reassurance helped.
Nathaniel was the kind of kid growing up that other kids wanted to hang out with. Inventive, smart, full of ideas for games and imaginary play. He never lacked friends. His teachers loved him because he did his school work to perfection and participated fully in class. A natural athlete, he was an avid soccer player and later cross country runner. And sense of humor? He could mimic anyone and would leave us in stitches. Once he invented an on-the-spot musical that he sang on a family car trip to our endless amusement. He could even turn criticism into comedy. While out driving once, he said calmly, “Mom, it’s a source of great comfort to me to know that if you ever have an accident and lose an arm, you won’t have to change your driving habits.” I burst out laughing, but the message got through; I have been driving with two hands on the wheel ever since.
When he first became ill in fifth grade, it was as if a bomb had dropped from the sky and blown our delightful son into an alternate reality. He ran one, two, then three times a day, virtually stopped eating, and lost so much weight that he had to be hospitalized. SSRI medication helped, and from then on, he began seeing therapists regularly. The diagnoses ranged from anorexia to OCD to school anxiety to social anxiety to generalized anxiety disorder, but he didn’t get the correct BDD diagnosis until seven years later.
BDD, an OCD spectrum disorder, is more prevalent than many realize. Two to four percent of the population suffer from it, with the highest proportion among college age students, yet many mental health providers do not know of the disorder or how to treat it. Convinced that they are ugly, sufferers often get stuck in the mirror or avoid mirrors completely, compare themselves to others, skip social situations due to concerns about how they look, and spend hours trying to “fix” or cover up flaws that others see as insignificant or non-existent. The focus is most often the face (nose, skin, hair), but sufferers can be paralyzed with concern about any part of the body. Not remotely like vanity, this crushing preoccupation with appearance can disrupt schooling, make employment difficult, and strain relationships. The suicide rate is the highest of any brain disorder — higher than for those with severe depression or schizophrenia.
Having a name for a brain disorder, sadly, doesn’t disarm the demon any more than knowing that you have diabetes improves your insulin levels. But it did lead us to skilled practitioners. Drs. Katharine Phillips, Michael Jenike, Tamar Chansky ’84, and Marty Franklin all had their times with Nathaniel, trying to help his mind find the space and energy to combat BDD’s onslaught. He tried various SSRI medications and many combinations of medications, which sometimes provided relief. Cognitive Behavior Therapy and Exposure and Response Prevention strategies — the gold standard of treatment — were only slightly helpful.
As he grew older and his symptoms intensified, he had to leave high school and earn his diploma from home. Some days he couldn’t leave the house, although he managed to work part time and found joy in coaching middle school cross country and teaching in an after-school program. By his mid-twenties, he was still living at home and could see no promise in his future. He watched his sister and friends go off to college, find partners, launch their careers. “BDD is my only companion,” he told me once. “It dictates my entire day, from the second I get up, until I go to sleep — the only time I get any relief. I would not wish this on my worst enemy.” He ended his life in 2011.
Very few people understand brain disorders, and even some people who knew Nathaniel didn’t fully grasp that his condition was not caused by faulty reasoning or an inability to face life’s challenges. Because BDD is under-recognized and under-diagnosed, my family and I have devoted much of our time to raise awareness and funds for research. Recent fMRI studies at UCLA have discovered that the brains of those with BDD process facial images on the left side of the visual cortex instead of the right, like the rest of the population. The brains of those with anorexia show the same anomaly, suggesting that sufferers focus on tiny details of appearance and not the whole picture. More research will determine if this finding is causal or correlative, but it points to anatomical factors involved in BDD and suggests that visual re-training in treatment might help. Genetics and social/environmental triggers also play a role, but the pathway of the disorder is not yet fully understood.
Brain-circuit-based therapies such as Transcranial Magnetic Stimulation, currently in wide use for depression, and Deep Brain Stimulation using implanted electrodes to stimulate areas of the brain — similar to the treatment used for Parkinson’s disease — may hold promise for those with severe BDD, but more research is needed.
If you think you may have BDD, or know someone who might be struggling with appearance concerns that interfere with daily functioning, don’t hesitate to reach out to a therapist at the college health center. The International OCD Foundation website has a large section devoted to BDD where you can learn more about the disorder. If you want to read more about Nathaniel, the website Walkingwithnathaniel.org details our family’s journey more fully.
Nathaniel knew that after he died, we would wonder what we could have done differently. “Please don’t,” he wrote in the letter he left us. “We were all doing the best we could and there is no regret in that.” No regret, but no silence, and no stigma either. Please spread the word about BDD, and get help for yourself or others who might need it. No one should have to struggle with this devastating illness alone. I know that is what Nathaniel would say.
Judy Nicholson Asselin ’75