Michael is physically fit, but would like to have a spinal cord injury

It was a sunny summer day 25 years ago when Michael rode his wife’s horse through a track. Suddenly an acquaintance ran past from behind and called out loudly to him. The horse got scared, ran away and threw Michael off. He hit his head against a wooden fence, but remained conscious. First he touched his legs – and felt them. “Instead of relief, a slight disappointment came over me,” he recalls. “It would have been such an easy opportunity to finally have a spinal cord injury.”

This is what the 53-year-old tells in a small bistro on the banks of the Rhine. In front of him is a crêpe with pesto, tomatoes and mozzarella, which he eats while sitting in his wheelchair, in the “Rolli”, as he calls his vehicle. Then he looks at his skinny legs, which have hardly any muscles because, although they are completely intact, he needs them as little as possible. “I see them, I feel them, but I don’t want them,” he says.

Michael suffers from a rare condition called Body Integrity Dysphoria, or BID for short, where certain body parts or functions don’t match his self-image. “Like a piece of meat without a soul,” says Peter Brugger, emeritus professor of behavioral neurology and neuropsychiatry at the University of Zurich, who has met several dozen patients in his career. They told him they wanted to be amputees, paralyzed, blind, deaf, or incontinent.

However, from the point of view of those affected, it is an incorrect expression to speak of a “desire for disability”. For her, correctly phrased, it is a “desire for depregnancy” or the desire for “intact bodily integrity,” as Michael puts it.

This desire usually begins in childhood or early adolescence. “The suffering of those affected is enormous and increases as they get older,” says Brugger. To live in a way that feels right to them, patients often tie a leg, wear common contact lenses, use crutches, or use a wheelchair. They call themselves “Pretenders” when they “pretend”.

Michael started this seven years ago. “I’ve always had a kind of buzz in my head because the body doesn’t match the stored body image. At some point it became unbearable and I had to do something,” he says. That was on a skiing holiday with his wife in 2016. During a break, they saw monoskiers, paraplegic athletes, sliding down the slope on one ski while in a monoskibob. “I told my wife that would appeal to me too,” Michael recalls, and then he told her everything.

Of course there have been many discussions and there still are. “But she never judged me, she quickly accepted everything and supported me from the beginning.” So Michael ordered a wheelchair on the Internet while he was still on vacation. When he was back home, he finally felt he had arrived: “The pounding in my head was gone.”

At first he moved alone in his wheelchair within his own four walls, then he dared to venture into the streets of the neighborhood at dusk. And now, since 2018, he only moves around in a wheelchair – and feels happier than ever. He and his wife gradually remodeled the house to make it wheelchair accessible – at their own expense.

Reactions from family and friends varied, some turning away, others accepting the “new Michi”.

The situation is also special for him with his hand bike colleagues, with whom Michael lives out his passion for the sport. With people who have involuntary spinal cord injury. He admits that some hand bikers don’t want to do business with him because they don’t agree with his story. With many others, however, he regularly makes trips with many beautiful moments.

At work, he was given the opportunity to switch from field work to the office. “I’ve always worked, always 100 percent, just in a wheelchair for a few years.” That’s important to emphasize Michael.

Not everyone is as open about their disorder as he is, making it difficult to estimate how common BID is. Most keep their desire for disability to themselves out of shame. You are aware that it sounds crazy and whimsical. And that which fascinates them is the worst thing that can happen to most people. This distinguishes BIS patients from those with psychotic disorders such as schizophrenia, who are unaware of their illness during periods of delusion. “Apart from their desire for amputation, BID patients are healthy and clinically normal,” says Brugger.

Those involved exchange ideas on the Internet, for example in the “BID DACH Forum”, the German-language forum for BID patients. There they call themselves “Augenlos”, “Holzbein62”, “Humpelstiltskin”, “onearmdreamer” and “wheelchair830”. Some posts are shocking, for example when a forum member describes, “The desire to have an amputation is damaging my psyche, the urge to do so is damn great. This urge forced me to tie off my leg to let it die. I injured myself and covered myself with dirt so that I would get blood poisoning.”

Such life-threatening acts of desperation are known from the scientific literature: cases of those affected who see no other way out than to try to get rid of their unwanted body part with a homemade guillotine, a chainsaw, freezing the limb in dry ice or the like. A few years ago, American Jewel Shuping shocked the public in a YouTube video when she said she destroyed her eyesight with a plunger.

If you have enough money, you can also decide to travel to Asia, where doctors perform such operations against corresponding expert advice.

The German psychologist Erich Kasten, together with Brugger one of the most important researchers in the field of BIS, investigated in a study whether BIS sufferers are satisfied with a fulfilled desire for disability in the long term. Twenty-one people participated, including a 43-year-old woman whose left arm was removed during surgery below the elbow, a 41-year-old man who had both legs and one arm chopped off by his friend, and a 38-year-old man who his right leg was amputated above the knee.

The limitations in daily life after the amputation were judged to be bearable by all study participants and not comparable to the suffering they had to endure before.

It currently seems that for many of those affected, fulfilling their disability wish is the only solution that will lead to lasting improvement. Because research shows that psychotherapies, medicines, electrical brain stimulation or hypnosis have hardly any effect.

This circumstance raises the ethical-legal question of whether there is a right to disability. “Everyone has the right to freely dispose of their own body,” says David Schneider, who conducts research at the intersection of law, medicine and ethics at the University of Zurich. This right, the right to self-determination, is enshrined in the federal constitution. “So someone can certainly choose to affect their own body in such a way that it leads to a disability.”

It becomes more complex when this right of self-determination cannot be exercised completely autonomously and medical assistance is required. “Because it’s not an emergency, the doctors can refuse treatment,” says Schneider.

If you find a willing doctor, he cannot be prosecuted or held liable if an amputation is a legitimate, evidence-based treatment method. But: “The doctor must first inform the patient about all the risks and consequences of the treatment. This includes not only tackling amputation as the most drastic option with irreversible consequences, but also exploring all available alternatives together with the patient,” says Schneider.

He adds that the right to self-determination also includes the willingness to bear the consequences of a decision. The fate such as that of those affected by BID is, of course, not indifferent to the welfare state. However, whether there is a right to state aid, such as social insurance, should be considered on a case-by-case basis.

Gianluca Saetta is a neuroscientist at the University of Zurich and a clinical psychologist at the Seewis Rehabilitation Clinic. He completed his thesis with Peter Brugger and has been involved with BID ever since. He and his team are currently testing a virtual reality (VR)-based method intended to support those affected in coping with their desire for disability.

The limbs that are perceived as strange are virtually amputated. With VR glasses, patients can move naturally in their environment, they look down on themselves, but the unwanted leg is missing. In a previous pilot study from the Netherlands with two patients, one of them said it was “emotionally overwhelming” to finally see yourself like this. The other also reported a reduction in his symptoms a few days after the test.

Saetta and his colleagues have just completed a larger VR study with 20 participants. It has not yet been published and is now being reviewed by independent experts. That is why Saetta does not want to say too much about the results yet: “The results are promising.”

For a long time, a distorted body perception was considered a fetish, a sexual inclination. But in a study published in the journal Current Biology involving 16 men seeking amputation, neuroscientists Saetta and Brugger used brain scans to find out that the condition has a neurological picture, that is, it manifests itself in the structure and function of the brain. “For those affected, there is a discrepancy between how the brain perceives their own body and what the mirror image shows,” explains Saetta.

However, the researchers don’t yet know if the altered brain anatomy is innate or the result of years of focusing on the unwanted part of the body. It is also unclear whether the condition has a genetic component.

In January 2022, BID was first included in the new version of the International Classification of Diseases (ICD-11), defined as an intense and persistent desire for physical disability. The World Health Organization’s ICD classification system is used worldwide to determine what a disease is, how it is defined, and how it differs from other diagnoses.

“This is an important recognition for those affected,” says neuropsychologist Brugger. Officially, it’s no longer just a whim. However, he doubts whether BID should really be treated as a disorder or a disease in the long run. “Maybe we should get rid of the idea of ​​trying to cure BID,” says Brugger. “People used to want to cure homosexuality and transsexuality. And today it is clear to everyone that these people do not need healing, only acceptance by society.”

Michael also talks about acceptance over and over again: “I didn’t choose all of this,” he says. Even though he regrets that some people can’t stand it and only see the wheelchair and no longer the person in him, it all has its advantages: “Today I know who my real friends are.” (aargauerzeitung.ch)