(NEW YORK) — The media has not always been kind to people who suffer from Body Integrity Identity Disorder, the unexplained urge to be an amputee or a paraplegic. 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 publicly about his Body Integrity Identity Disorder, or BIID, for the first time to ABC News. “Maybe I am. In all other aspects of my life, I’m completely lucid — except this one abnormal slice of my life.”
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.
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 ABC News 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 full-time 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.”
“In the end, it is a real condition that causes terrible pain for people,” O’Connor said. “I know a few people who have died from it, either through self-injury attempts or suicide.”
Comer said he was apprehensive about coming forward to ABC News, 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.
Copyright 2013 ABC News Radio