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Letter to the Editor: Worried About How You Look?

in Letter to the Editor/Open Letter/Opinions by

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

CAPS increases staff hours to meet students needs

in Around Campus/News by

As the semester draws to an end, Counseling and Psychological Services has increased its staff hours to meet the increasing need of students. Increasing CAPS’s capacity through extended hours has been standard procedure for years.

The Director of CAPS David Ramirez explained how this adjustment works. They bring in independent contractors who have been collaborating with CAPS for several years while increasing working hours of the staff.

“We have a group of people we hired, who have previously worked at CAPS, to come in and add [students to our schedule]. So the improvements or the adjustment is that when we get busier, we get more hours from those people, so that when people make requests to been seen, they can be seen in a timely fashion,” said  Ramirez.

Along with increase in staff time, CAPS also brings in independent contractors to increase its capacity.

“Now, we are here in April, we are kind of running at peak capacity. So we are providing 225 hours of contact time per week, and we are running two groups, each of which has eight or nine students, and it meets for an hour and a half each week. We have a counselling psychiatrist, who is working with a subset of students who are being seen. And our psychiatrist provides a lot, from sixteen to any hours a week,” said Ramirez.

However, when asked if it was easy to get an appointment, Fanyi Ma ’19 answered that it has been a struggle.

“It’s hard to get a time slot that actually works for me. After I missed several appointments, they cancelled my future appointments and put me on the waitlist,” said Ma.

Ma thinks that to increase its availability and accessibility, CAPS needs to hire more people. However, it is not something CAPS is aiming to do, mainly due to its limited space on campus.

“The building was renovated in 2012. So we went from having four clinical offices, consultation offices to having eight. So the number doubled. So we keep those offices filled with staff everyday of the week. So we can’t add any staff because we don’t have space to put them,” said Ramirez.

Ramirez then explained that, when the independent contractors came in, they had to squeeze in between regular office hours or come after regular working hours.

“They stay till eight or nine during the week. So we don’t have to have a whole separate office but we still can get quite a bit of time, clinical time,” said Ramirez.

Ramirez said that the number of staff at CAPS has not changed much in the past three years. In the last five years, however, CAPS has undergone some big changes in staff number.

“Starting around probably 2012, we added an entire staff person, then the year after that, two people who have been here three days a week. As they retired, the college increased staff time to five days a week. So effectively we’ve added two staff people in the last five years-worth of time,” said Ramirez.

Still, Ma thinks that CAPS need to work on its efficiency.

“The counselors there are professionally trained to help with mental illnesses and respond to crises. They should be serving the students who are most in need. There are other resources on campus (RA, SAM, DPA, SPEAK2SWATTIES) that students can go to when they are ‘feeling down’ or experiencing difficulties orienting social or academic life,” said Ma.

Despite increased pressure on CAPS there are currently no plans to make permanent changes to the service.

Worth develops electronic record system, reflections on center’s effectiveness

in Around Campus/News by

The Worth Health and Wellness Center, the only medical center on campus, is the first point of contact for students in need of medical care on campus. Its offers holistic care, with a focus on prevention and screening, and offers treatment for both acute and chronic health issues. However, Worth has limitations and is not always able to treat students on-site. Worth has recently updated its record system to be fully electronic. The new system intends to make the process of visiting the health center more sustainable as well as more efficient for students. Director of the Student Health and Wellness Service Alice Holland explained the benefits of the switch to the electronic system.

“We fully implemented an electronic health record system this semester. This is an exciting advancement since the adoption of the [electronic health record] system assists in documentation, data collection, and quality assurance. This implementation also aligns with the College’s sustainability efforts.”

The electronic health portal also gives students greater ability to get in touch with the health center and increases accessibility of student’s health records as they can reach their Student Health Portal through their mySwarthmore account.

“The Student Health Portal allows students to access their health information from their computer or mobile device. Students can view their upcoming appointments, complete forms, review their discharge plan and visit statements, and receive secure messaging regarding their care. This decreases the amount of time students spend in the waiting area completing paperwork prior to their visits,” Holland wrote in an email to The Phoenix.

The efforts of the health center reflect a larger movement by the college to be more sustainable. The changes also will give students more immediate access to their own medical information.

The Health Center itself is run in a nurse-practitioner model, meaning that nurses and nurse practitioners are the main source of care for students rather than doctors. Haverford and Bryn Mawr offer similar models in their health centers, although Bryn Mawr offers same day appointments with a physician if students need an increased level of care. Nurse practitioners have advanced degrees in addition to the Bachelor’s of Science in Nursing and are able to diagnose illnesses and write prescriptions, whereas regular nurses cannot.

“Nurse practitioners are licensed, autonomous clinicians focused on managing people’s health conditions and preventing disease. They fulfill an important role in the healthcare system by offering a holistic approach to patient care. Our nurse practitioners are family practice certified. The nurse practitioner model provides consistent coverage when the Health & Wellness Center is open. This provides increased access for our students compared to limited physician hours. Our nurse practitioners can directly consult with the physicians as needed,” Holland continued.

However, Worth is not able to respond to all situations and sometimes needs to refer students to outside care. Worth offers general care and is limited in some of its abilities.

“The most common reasons for visits include general illness, simple diagnostic screenings, and preventive care. Advanced testing and treatment such as x-rays, sutures, IV fluids, and care requiring a specialist are referred to local resources,” Holland explained.

Most interactions with Worth do not end require immediate care from an additional off-site provider, but some situations test the center’s limits. Daniel Wallick ’20 encountered such a situation at the beginning of this semester.

“They were very supportive even when they did not have all the necessary resources and did everything they could. They organized [sending me to an offsite location for treatment] very well.”

Wallick also expressed his opinion on the new electronic system, saying that he did not like checking in for his walk-in appointment on the computer. He preferred to explain his symptoms to a person as opposed to detailing them on a computer. Upon entering the health center, students are instructed to use a computer located past the receptionist’s window to sign in to appointments.

“I found it harder to explain why I’m there writing it on the computer than explaining it to a person,” he said.

Not all students are as content with their visits to Worth as Wallick was. Abigail Goodman, ’20 was misdiagnosed at Worth and ended up going to the hospital near her home in Maryland. Goodman has had strep throat in the past, and went to Worth with symptoms of strep. However, Worth diagnosed her with another illness, and she soon got sicker.

“I have a history of strep and know how it feels, and even when a test comes back negative, it’s usually wrong if a culture is done after. Worth did not do a culture. They […] did a rapid test, and told me I probably had a virus.”

Goodman eventually was admitted to the hospital.

“My fever got so high that night I had to be hospitalized and get a shot of penicillin because, due to the inflammation in my tonsils, I could not drink or swallow. After I got antibiotics and finished them, I contracted strep again, so I went to Worth again, and they misdiagnosed it as an abscess. I went to an ENT who prescribed more antibiotics and a steroid. […] I have a history of strep, and [Worth] didn’t take that into account,” Goodman explained.

The electronic system, which includes secure messaging with the health center, has the potential to increase students’ communication with Worth about their health. Additionally, knowing the parameters of the care the health center is able to provide beforehand may help students self-advocate for the care that they feel they need.

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