Disorder Makes Patients Want to Be Disabled

Feb. 8, 2013— -- The media has not always been kind to people with an unexplained urge be an amputee or a paraplegic – who suffer from Body Integrity Identity Disorder. Although it has led the secret community of these "transabled" individuals to realize they are not alone, it's also prompted outrage against them, with attacks from bloggers, commenters and social media users who call them pretenders and attention-seekers.

But all Mark Comer wants is a cure.

"For the longest time, I thought I was crazy," said Comer, 54, speaking publically about his Body Integrity Identity Disorder, or BIID, for the first time to ABCNews.com. "Maybe I am. In all other aspects of my life, I'm completely lucid -- except this one abnormal slice of my life."

A Taboo Wish and Secret Shame

Comer said he's "rejected" his left leg above the knee since he was about six years old, but he kept the forbidden thoughts hidden from almost everyone for decades. How could he tell anyone he didn't want his perfectly healthy leg?

"For some reason it feels like there's a mistake in how my brain interprets my body," he said. "Anxiety. That sort of fits the description best. Frustration to a great degree. There was nothing in my mind other than getting rid of this effing leg."

Comer could be right. A 2005 study of two men who desired leg amputations found that they actually showed abnormal brain scans when researchers pricked their skin below the imaginary line of desired amputation. Researchers at the University of California in San Diego concluded that it could be a problem with the right parietal lobe which is responsible for mapping the body.

But Comer didn't know that in 1996, when he reached his breaking point and planned how he would rid himself of the leg on his 38th birthday. He went to a garden supply store, bought a concrete parking barrier, sat down in his garage and dropped it on his left leg, hoping to do enough damage to warrant an amputation.

Strangely, he didn't feel pain when the concrete slammed onto his leg, he said, but he kept this from the doctors who arrived after he calmly dialed 911. He didn't want to let on that he hurt himself on purpose.

"Imagine the sensation you have when your foot goes to sleep," he said. "It was tingling. A very large tingling. I wouldn't call it pain."

Comer spent a month in the hospital, but the leg stayed where it was. Doctors didn't amputate because he somehow managed to leave his bones intact. He did, however, severely damage the ligaments in his knee. Coupled with a separate back injury and his BIID, Comer started to use a wheelchair a few years ago.

Discovering a Transabled Community

Years later, when America Online was mailing out free trial floppy discs, Comer discovered the chat room that would change his life forever: Wannabes and Devotees. It was a virtual room full of people who wanted to either have sex with amputees or paraplegics or people who wanted to be them. Although Comer said his need to be an amputee has nothing to do with sex or a need for attention or a wheelchair, he felt relief wash over him.

"I thought I was the only one on earth," he said.

Now, Comer is an administrator on ahiruzone.com, a site for wheelchair-users, and he occasionally visits transabled.org, a 10-year-old site for people who want disabilities that was founded by Sean O'Connor.

O'Connor told ABCNews.com he experienced a similar childhood full of confusing thoughts. He used to hold his legs still on long car rides with his parents and imagine he was paralyzed even though he didn't fully understand what that meant at the time. As an adult, he, too, tried to injure himself to become paralyzed, but he was not successful and said he has no intentions of trying again.

O'Connor remembers the relief of finding other people like him in the 1990s and said he gets at least six letters a month from transabled.org visitors who want to thank him for making them realize they're not alone, either.

Currently, transabled.org has 35 authors, five of whom write regularly, O'Connor said. Ahiruzone.com has 121 members, Comer said, adding that it's not clear how many of them actually have BIID.

Dr. Michael First, the research psychiatrist at Columbia University in New York who coined the name BIID, said he estimates that there are thousands of people in the United States suffering quietly with it. Of his two current patients in New York City, one uses a wheelchair fulltime and the other uses it at home in secret. Neither physically lacks the use of their legs.

First has studied 52 patients who want to be amputees and another 53 who wanted another disability, which isn't limited to spinal injuries. Some BIID patients long for blindness and deafness, he said.

"The phenomenon starts in childhood in almost all cases," he said. "They go through life feeling chronically uncomfortable, miserable. The way that they should be is not the way that they actually are."

Enter the Media

In 2007, Jerry Springer introduced the world to Sandra, a transexual who chopped her legs off with a power saw because "my brain told me to." Springer called it "the most bizarre show" he'd done in his 15-year history. At the time, BIID wasn't on Springer's – or Sandra's – radar, but she laughed it off and returned for a show that included a pre-taped re-enactment of how she cut her own legs off with a saw.

Between 2004 and 2010, BIID appeared in two documentaries and one feature film at Sundance Film Festival. ABC News did a story on it in 2006, but all interviewees hid their identities.

Chloe Jennings-White decided she had nothing to hide and became something of a spokesperson for BIID a few years ago because she realized that everyone she cared about already knew that she wanted to be a paraplegic so badly that she'd tried hurting herself.

"I looked at my own situation and realized I did not have any of the reasons [to hide] that anybody else had," Jennings-White said. "What's my excuse?"

Jennings-White uses a wheelchair to treat her BIID, and although she was skeptical that it would help her at first, she calls the feeling of first sitting down in the chair "magical." She now lives most of her life in a wheelchair, but uses her legs to hike, drive and occasionally ski -- which she hopes will finally paralyze her.

"I knew it was weird to want to not have the use of one's legs," she said, remembering her years of secrecy, including how she kept an intentional bike accident from her mother when she was 9 years old. "I just didn't think anybody else could understand what that was like so I kept it to myself."

Jennings-White is also intersex, a condition in which someone has ambiguous genitalia. She was born as Clive before she changed her name to Chloe.

Jennings-White made her first television appearance on a National Geographic series called "Taboo," prompting heated debates even before it aired. A spinal cord injury forum had to shut down a conversation about the show because posters became so hostile toward one another. They argued over whether Jennings-White should experience a loss of bladder control to see how it really feels to be a paraplegic and whether some posters were insensitive to her plight.

Last February, Anderson Cooper interviewed Jennings-White on his daytime television show. Cooper interrupted Jennings-White during the interview to say actual paraplegics would find her need to be paralyzed "completely inappropriate," prompting applause from his studio audience.

Despite the hostility, Jennings-White said she's received messages from people who sympathize with her – even people from the disabled community.

Although O'Connor, the transabled.org founder, said he thinks the way Cooper treated BIID as a topic was "a shame," he still thinks it's important to raise awareness about it.

"In the end, it is a real condition that causes terrible pain for people," he said. "I know a few people who have died from it, either through self-injury attempts or suicide."

Despite the hate and scorn so often directed at Jennings-White, Comer came forward to ABCNews.com because he didn't want her to stand alone.

"I don't have T-shirts printed up," he joked. "Really, honestly coming public with this is a big step."

He said he was apprehensive about coming forward, but he hopes his voice will raise awareness and maybe even prompt more research. He even volunteered to be a "guinea pig" if it means a step toward a cure.

"So far, she's been our national public voice," Comer went on. "[I want] to augment what she says and provide yet another experience of this because no two people will experience the exact same thing in life."