healthDate: November 15, 2016 vox
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I already had body dysmorphic disorder. Then my skin started changing color.

One percent of Americans have vitiligo, the skin disorder made famous by Michael Jackson. I’m one of them.

On the third day of being locked in my apartment, it dawned on me that I would eventually have to step outside.

I’d finished off a box of cornflakes the day before. I was officially out of food, and I felt a gnawing pain at the bottom of my gut. This was hunger, the real kind, and I was left with little choice but to throw on a hoodie and head to the grocery store.

I layered on as many clothes as I could, careful to avoid any mirrors. I shook as I got myself dressed, not from hunger or because I hadn’t slept the night before, but because I was afraid.

I was going outside. People were going to see me.

My condition has a name: body dysmorphic disorder. It means obsessive preoccupation with a perceived defect in physical appearance. But I wouldn’t learn that until later. When I locked myself in my apartment for three consecutive days, it had no name.

It wasn’t, at that time, even a disorder. It was a series of concerns. It was squashing my ears against the sides of my head because I thought they stuck out and taking pictures of myself in profile to see how big my nose was. It was burning a dirt track around my parents’ house because I had to run until I wasn’t fat anymore.

Research on the subject is scarce, but BDD is a condition that some experts believe could affect at least one in every 200 people.

Here are seven things that might help you understand it a little better.

1) Body dysmorphic disorder is an obsession with a flaw that may not even exist.

Why did I lock myself in my apartment? Because I thought my head was too big for my body.

Not as in, “I can’t find a hat that fits, ha ha.” As in, I believed I looked like a bobblehead toy; that my head was so huge that people would laugh if they saw me.

Somewhere in the back of my mind, I knew the facts of the situation. No one had ever made fun of me for having an oversize head. Even if the size of my head were an open secret, nobody had ever treated me differently because of it. But these facts didn’t matter: The moment I persuaded myself that I had a cartoon head, I became obsessed with it. It was the only fact that mattered.

For a person with BDD, each perceived defect becomes the new center of the world. Everything in life is reduced to an opportunity to either confirm or deny his worst fears. For me, this looked like asking my friends, as casually I could muster, “So, do you think I have a big head?” A question that almost always elicited a, “What?” or an, “Excuse me?”

I couldn’t help myself. I was obsessed. I was consumed. I knew how ridiculous I sounded, but the state of mind I was in compelled me to keep asking, even though I knew there was nothing anyone could say that would make me feel better.

Yes, I knew that only I could see this flaw. But that didn’t make it any less real to me.

2) We use rituals to cope with overwhelming anxiety

Apart from BDD, I suffer from generalized anxiety disorder, but even with that baseline, BDD produces anxiety more painful than any other I’ve experienced.

When my GAD leads to a panic attack, I can usually wait it out. If I can make it an hour, the feeling will pass.

But the panic my BDD provokes can last for days. Sometimes it lasts for weeks. The anxiety feels more urgent than the general kind, more primal. The only thing that matters is that I fix this flaw. Until it’s fixed, I can’t go on living, no matter the costs.

My friends and family just didn’t want to hurt my feelings, my anxiety told me, so they couldn’t be trusted

Some BDD sufferers go as far as radical plastic surgery to assuage this panic. More common, however, is attempting to cover up the flaw and live normally with it hidden. For me, this involved wearing chunky sweaters, oversize hoodies — anything that bulked up my body to a size I thought was more appropriate to my head.

The “covering” let me function, but barely. I felt like I was walking on knife’s edge. One slip-up, one stray glance into the wrong mirror, one plausibly negative comment, no matter how casual, would be enough to destroy the fragile peace of mind my clothing gave me.

When I didn’t have to be out in public, I’d spend my time at home taking pictures. An embarrassing number of pictures. So many pictures that whenever I’d come down from an especially intense bout of anxiety, it would take me an hour to go through my phone and delete them all.

Behaviors like these are what people with BDD call “rituals.” They exist out of necessity. The mind looks for ways to rid itself of the stress, for something it can tangibly do to get to a better place. Anyone who suffers from obsessive-compulsive disorder will likely recognize this need for rituals. BDD acts in much the same way.

Without these rituals, there would be nothing to distract the mind from the pain of the persisting defect. In addition to spending several hours every day taking pictures, I also spent a considerable amount of time on my computer looking up ways to conceal my flaw. At the same time, I looked to confirm it: I sought out strangers online, people I thought would give me a frank answer. My friends and family just didn’t want to hurt my feelings, my anxiety told me, so they couldn’t be trusted. Internet strangers would tell me how big my head was, and then, somehow, I could fix it.

3) BDD goes hand in hand with eating disorders

I was overweight as a kid. I was biracial, too, and the combination left me with a body type that proved easy fodder for my middle school classmates. My ass was large, my chest was huge, my waist was small next to both of them, and so they would tease me for having the “body of a girl.” I learned to be ashamed of being seen, of taking up space, of looking the way I looked.

My mind made sense of this treatment by making it rational, even deserved: You are being bullied because you look hideous. If you looked different, people would be nicer to you.

I was 16 the first time I purged. I would run several miles a day, so often that I burned a dirt track around my parents’ house with my feet. I starved myself. I got so thin that people were concerned. They asked if I was sick. They asked my mother if I was eating. They asked me if I was “manorexic.”

I took it all as a compliment. I would rather be sickly thin than fat. Even when it became painful to sit down because I had nothing between my skin and my bones, I was happy because I wasn’t heavy anymore.

But self-loathing is fickle, and one day it flipped the script. I realized that I didn’t want to be skinny, because skinny wasn’t “manly.” I wanted to be muscular. I wanted to be bigger.

Before I could only see my body as fat: Even at my thinnest I wanted to be thinner. Then, suddenly, it was sickly. Disgusting. I was so thin that my head looked huge on my body.

A new defect was born.

4) Pictures and videos are everywhere now — and that makes it so much worse

I can’t imagine that BDD has ever been easy, but I think it’s made harder by a world where Snapchat and selfies pervade.

It seems like everyone wants to take a picture these days. Everyone wants to remember every moment in film. But film and photographs, like mirrors, are the enemies of anyone with BDD.

It tends to go one of two ways: Either you completely avoid your own image, or you’re obsessed with it. You avoid the mirror, or you never stop looking in it. You take no pictures, or you take a thousand.

If forced to confront their reflection, people with BDD are likely to spend enormous amounts of time looking at it, searching for the flaw they know is there, trying to determine if it’s real or imagined.

The endless scrutiny offers no clarity. For all the time I’ve spent looking at myself, I do not know what I look like. Every mirror, every photo, every video presents a different version of me. Sometimes my flaw is proven real. Sometimes it is there but not as bad as I believed it to be. Yet even this validation doesn’t help; it only sends me seeking out more mirrors and more photos in order to confirm my relief, and this only brings me back to finding my flaw again — bad as ever.

Despite, or perhaps due to, the obsession, I hate being photographed.

“No, please, I don’t like photos,” I say when one of my friends takes out their phone for a picture. “Please.”

If they take a picture anyway, I become incredibly hostile.

“I said I don’t like pictures. What about that do you not understand? I said no.”

I am desperately trying to avoid a confrontation with my appearance.

The last time I saw a video of myself, it was for work. I have a job in media, and I was asked to speak about an issue in front of a camera.

I tried to push through. I didn’t want to be a bad employee. But in the end, when I had to watch and hear myself, it shattered me.

I walked to the bathroom and stayed there for an hour. I cried. I spent time looking in the mirror, trying to rebuild an image of myself I could live with, looking for the flaws I hated so much. It wasn’t anyone’s fault. It’s living with BDD — I couldn’t stand to look at myself, but I needed to.

5) BDD is underresearched and underdiagnosed

BDD can have drastic consequences beyond the day-to-day pain of the condition. Some consider suicide. In the depths of one of my episodes, I told myself I couldn’t live like this the rest of my life, that if I had to feel this way, even occasionally, it wasn’t worth going on.

But despite these risks, studies of BDD remain scarce, and information is difficult to find.

Despite how common it’s now believed to be, it often goes undiagnosed and underrecognized.

What we do know is that most people with BDD suffer from other mental disorders simultaneously, the most common of which are depression and anxiety.

When an official diagnosis made me more aware of my illness, I tried to seek out a community. But this proved difficult: The very nature of the disease makes people uncomfortable with being forthcoming. They worry it might draw attention to their perceived flaw. Doing so right now, even in a relatively lucid state of mind, is a challenge.

The disease is also difficult to diagnose in men, who are far less likely to admit that they have an eating disorder or that they struggle with their appearances. That was a fear I had. According to all the societal messages I’d received, men weren’t supposed to have mental illnesses, and they certainly weren’t supposed to be worried about the way they look. At the height of my suffering, when I locked myself in my apartment for three days, I was still in the closet. I was terrified of being associated with anything people might see as feminine.

But despite the “unmanliness” of worrying about one’s appearance, men still receive daily messages about what the ideal man is supposed to look like: tall, a head full of hair, muscular, and rugged. The result is a perfect storm. Men suffer from BDD, but don’t want to talk about it.

That’s how it was for me.

The limited research we do have, however, shows that men and women are about equally likely to have the disease. If we want more people to seek treatment, we must push for more research and examine how our society induces the terror of physical imperfection, then discourages its victims from seeking help.

6) Therapy and medication offer hope, but not a cure

I’ve painted a pretty grim portrait of BDD. But I must stress that there is hope.

Serotonin reuptake inhibitors have been shown to be effective in treating BDD. I take Zoloft and a mood stabilizer. More research is required before we know the best drugs for this particular illness, but studies show that symptoms do improve after patients go on medication.

It’s okay that I’m feeling this right now, but I know I don’t have to feel this way

Therapy is also important.

For me, the most effective form of therapy has been dialectical behavior therapy (DBT), a form of cognitive behavioral psychotherapy that focuses on mindfulness, distress tolerance, and emotional regulation.

DBT has taught me how better to regulate the intense emotions that my dysmorphia can provoke. It has also taught me how I can acknowledge the pain I feel and the visceral reaction my body has to my BDD while also acknowledging the facts: I am having this reaction because of my illness. It’s okay that I’m feeling this right now, but I know I don’t have to feel this way. I know that it will pass.

Mindfulness, the practice of being present in the moment, has also proved to be very useful in my fight with BDD. Exercises vary, but one I find helpful is picking out an object and listing facts about it. This table is made of wood. This table is brown. This table has four legs. This helps me anchor myself more firmly in reality and keeps me from straying too far into obsessive, abstract fears.

Treatment hasn’t cured me. But it has helped me achieve a sort of agnosticism about my appearance. I have a body. My body is just fine. My body isn’t the most important part of me.

7) There are good ways to be there for someone with BDD — and bad ways

Don’t tell someone with BDD that her flaw doesn’t exist. We know. If we don’t, it’s because that flaw has become the most basic fact of our universe. Neither case is helped much by debate.

But being there for a friend or loved one with the disorder isn’t impossible.

I can’t tell you how many phone calls I’ve had with my mother while I was going through an episode. She didn’t tell me that my flaw wasn’t there — that wouldn’t have helped — but she did remind me that my pain stemmed from a mental illness. She helped me take my mind off the flaw and redirect my focus onto the facts of my situation. And that’s perhaps the best thing you can do for people with BDD: help take their mind off it.

Do something else.

The last time I had an episode, a friend asked if I wanted to take a walk. We went outside, away from my bathroom mirrors and to a place where I couldn’t take any photos, and we talked for a while.

It can also be vital to take people with BDD away from their triggers, to ask them what might set them off and help them avoid it. If they don’t want their picture taken, if they don’t want one of their physical features discussed, if being in a certain kind of environment makes them uneasy, those requests should be respected.

Communicating and respecting these requests might seem small to a person without BDD, but they could save a person with BDD from several hours of anxiety, pain, and wasted time.

If a friend or loved one feels like she might have BDD, encourage her to seek help. As with any mental illness, self-diagnosis is not suggested. Once BDD is diagnosed, that person can move forward in seeking ways to treat it, and I speak from personal experience when I say that a little bit of treatment can go a long way.

This is a poorly understood disease. It is discussed so rarely that it is often mistaken for something else entirely: vanity, or OCD.

What we can all do right now is help start a dialogue about it.

When I locked myself in my apartment for three days, nothing was more terrifying than the prospect of stepping outside where people could see me.

Today, I am healthy enough to write about my illness, to discuss my perceived flaw where everyone can read it, and to do so without sacrificing my peace of mind.

Progress is possible. Like most things, the first step is the hardest.

healthDate: November 15, 2016 vox
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