She says that, if she closes her eyes, she can feel her hands against her sides. She can feel her fingers when she wiggles them, her head when she tilts it, her right leg when she moves it. She can feel everything except for her left leg, from mid-thigh down to her toes. There, feeling ceases and her leg seems alien from the rest of her body. She’s so keenly aware — and unaware — of it that she can point to the exact spot where the “real” her stops and the part of her that’s “just an object” begins.

Dabrowsky suffers from body integrity identity disorder (BIID), a rare, infrequently studied and highly secretive condition characterized by “an intense and persistent desire” to become disabled despite otherwise being healthy.

Alternatively known as body integrity dysphoria (BID), xenomelia, or apotemnophilia, it usually affects limbs, but can also extend to wanting to be deaf, blind, or paralyzed. Onset tends to occur around age 8 to 12; it’s unknown how many people are afflicted with this condition.

Those with BIID feel discomfort, embarrassment, or extreme ambivalence toward their unwanted body parts, and may also feel sexual arousal connected to their desire for having those limbs removed or being taken care of afterwards. Unlike those with amputee identity disorder, people who suffer from BIID turn to surgery not because they necessarily want to be handicapped, but because they see the removal of this body part as a cure for their constant suffering.

“The big thing to understand about BIID is that nobody wants to be disabled. It's a means to an end, when the end is ‘not feeling like there's an alien attached to me,’” Dabrowsky told OK Whatever over email. “Somebody else described it as feeling like their soul doesn’t extend into their limb...it’s sort of just an object that’s there.”

If something bumps into her left leg, Dabrowsky might be confused as to where — or what — she touched. Sometimes, when both of her feet are flat on the floor, her brain erroneously tells her that her left leg is crossed over her right. She has even been startled by the sight of it, mistaking her leg for someone else’s and thinking, Who’s sitting next to me?

BIID is such a rare disorder that many afflicted with it don’t even know there’s a name for it. Dabrowsky didn’t learn the terminology until she was 21.

Doctors aren’t even sure what causes it. Some claim it can be triggered by seeing an amputee as a child, while others suspect it has to do with a congenital defect in the brain. Not surprisingly, help for those with BIID is scarce. Outside of talking to a therapist, many solely find support online. Dabrowsky has run closed BIID groups around the internet for several years and has a separate Gmail account that she specifically uses for BIID related things.

People with BIID typically keep their condition secret. The disorder is highly stigmatized. Dabrowsky, who even uses a pseudonym with her fellow BIID sufferers online, declined to send a OK Whatever photo of the leg she wants to remove. Not only did she worry about people being able to identify her, but taking photos of her leg — which to her feels like it doesn’t belong, but to others looks totally normal — felt trivializing.

“I assume you wouldn't ask a person with facial dysmorphia to send you pictures of the parts of them that are wrong. My body isn't for people to look at and say, ‘Well your leg is completely normal!’”

Alison*, an 18-year-old trans woman who lives in a rural area of the U.S., is similarly clandestine about having BIID. She keeps it a secret from most people in her life, especially her “conservative” parents with whom she still lives.

Further complicating things, Alison is in the process of transitioning, a change that her parents reportedly have no clue about either. Since November 2018, she’s been taking hormones purchased online. Lacking a driver’s license, she often feels trapped at home but, since finishing high school last spring, she said she’s “trying to work on getting out of here, primarily so I can get the help I need.”

BIID has affected Alison since the age of 14. Though she feels it in both of her arms, “the feeling is the worst” in her hands from the wrists down.