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If Minnie Iris hadn't gone to her doctor and insisted that she had body dysmorphic disorder, it's possible she wouldn't be alive today.
The disorder, a mental illness in which patients become obsessed with perceived flaws in their appearances, isn't well understood even among some psychiatrists. But it results in symptoms that mirror obsessive compulsive disorder, and those who have it may be more likely to commit suicide than people with any other mental illness.
"Oh, well, are you sure?" Iris recalled her doctor asking her. "I think you've just got general depression."
Body dysmorphic disorder, or BDD, could affect up to an estimated 2 percent of the population in varying degrees, according to the Body Dysmorphic Disorder Foundation, though the Anxiety and Depression Association of America says it may be closer to 1 percent. In Western cultures, men and women are equally likely to have moderate to severe cases of it.
"BDD is a pretty tough illness to treat, and the reason is that they have pretty severe obsessive thoughts. They're preoccupied about imagined body defects and have a lot of complicated rituals," said Dr. Eric Hollander, of the Albert Einstein College of Medicine and Montefiore Medical Center, who did not treat Iris.
Behaviors include "mirror-checking, camouflaging and having cosmetic surgery over and over again," Hollander said. BDD is often compared to OCD, but BDD patients have higher rates of depression and suicide.
Not all psychiatrists are trained in how to spot and treat BDD which means many people who have it don't have access to treatment, said Dr. Katharine Phillips, of the Warren Alpert Medical School of Brown University, who specializes in BDD and has authored several studies on the subject.
Hoping to find new ways to bring treatment to patients via the internet, researchers in Sweden just conducted the largest study of body dysmorphic patients ever, consisting of 94 patients. Study author Dr. Christian Rück, of Karolinska Institutet in Stockholm, and colleagues found that receiving therapist-led, web-based cognitive behavioral therapy for 12 weeks was associated with a reduction in BDD symptoms compared with online supportive therapy, reported in the medical journal The BMJ. "BDD is quite a common disorder, and it's very hard to get any help for it," Rück told VICE News. "I think by using the internet … we could reach many patients who otherwise would be left untreated."
Iris, said symptoms of the mental illness started when she was 11 years old, when she was bullying for being one of the only Asian students and fixated on creases in her neck, but back then no one knew what BDD was.
"I believed I was ugly," she said. "I believed it was the truth, and then I just had really low self esteem."
'A lot of people in general public think it's a vanity-based issue, that it's not a serious thing. It actually has the highest suicide rate of any mental illness.'
Although she struggled with an eating disorder and became irrationally concerned about other perceived physical flaws, she was able to function until she was about 38. That was the year Iris's mother died, and the year her hair started falling out from the stress.
But Iris didn't only fixate on the hair loss, which kept her from seeking new employment once she finished sorting her late mother's estate, which became her full time job. She also became anxious about her aging skin. She started to feel monstrous when she spotted herself in the mirror, so she avoided her reflection even in things like train windows. Then, she started to think about killing herself.
"I had a lot of suicidal thoughts, and I did start to feel that if I don't get help for this, it's likely I'll end up taking my own life," she said. "A lot of people in general public think it's a vanity-based issue, that it's not a serious thing. It actually has the highest suicide rate of any mental illness."
Iris began searching the internet for answers, when she stumbled across a video about BDD.
"I thought, 'Oh my god, this is exactly what I have,'" she said. "It was quite a bit of a realization that this is an identifiable problem and you can get treatment for it."
Once she convinced her general practitioner that she had something more than depression, she was officially diagnosed with BDD by a specialist and started cognitive behavioral therapy, which involves facing the fears associated with the illness and learning to move past them.
While she was sick, Iris ritualistically retouched her make-up and said self-deprecating things about her appearance to get reassurances from friends that she looked fine. Although these were "safety" behaviors that she felt she needed to do, she learned in therapy that they were actually making the problem worse.
"These very safety behaviors making me feel safe are things keeping me trapped within the illness," she said.
Today, Iris is a trustee with the BDD Foundation. Although the foundation is in the United Kingdom, she said she hears from Americans who struggle to find treatment and information as well.
Compared to other mental illnesses, like schizophrenia and bipolar disorder, "it's quite striking how little treatment is offered to these patients right now," said Rück, the lead study author of the most recent BDD study.
For Iris, everything changed once she got into therapy specifically designed for BDD. But she had to drive three hours to get to the hospital where a support group met. And because of the limitations of government health care in the UK, she's needed to seek private BDD treatment as well.
Today, Iris, 48, is going through her second round of cognitive behavioral therapy for BDD and hopes to one day go back to work as an artist and find a loving, healthy relationship again. (She was married, but has been single through the most severe BDD symptoms.)
"But the biggest one is to learn to accept myself," she said of her goals for the future. "To love myself. That's a real big one."
Follow Sydney Lupkin on Twitter: @slupkin
Photo via Flickr