Saturday, January 26, 2013

The woman who desperately wants to be paraplegic

She has a rare condition called Body Integrity Identity Disorder which means she desperately wants to be paraplegic – paralyzed below the waist

For most people, being told they need a wheelchair would be their worst nightmare.

But for Chloe Jennings-White, it was a dream come true.

The 57-year-old suffers with a rare condition called Body Integrity Identity Disorder, a rare psychological complaint which means she desperately wants to be paraplegic – paralyzed below the waist.

So when she was finally diagnosed in 2008, and doctors suggested she tried using a wheelchair to control her urges to damage her own spine, she was more than happy to give it a try.

Now Chloe, a research scientist in psychiatry, chooses to live her life on four wheels, pretending to be paralyzed.

“Being able to use a wheelchair is a massive relief, and the closest I will probably ever come to being paraplegic,” says Chloe.

“BIID is a serious condition and for years I had no idea what was wrong with me.

"Now, finally, I know I’m not alone, and using a wheelchair helps to curb my desire to break my own back, so it has probably saved my life.”

Chloe’s obsession began when she was nine.

In an attempt to copy her aunt Olive, who had become paraplegic in her 20s following a biking accident, Chloe took to her bike with the sole intention of crashing and breaking her back.

“I didn't really know what I was doing,” says Chloe. “But I had an overwhelming urge to be paraplegic like my aunt. I didn't know there was anything wrong with that.

“I rode my bike off a tall wooden stage I’d set up in a park. It resulted in some cuts and bruises, but nothing more serious than that.

“I landed on my neck with the full force of the bicycle on top of me.

"It was at that point that I realized I was just as likely to break my neck as I was to break my back and end up quadriplegic – totally paralyzed, which I did not want,” she says.

Chloe says the wheelchair has saved her life

At school Chloe had a friend who had polio, and a neighbor with Spina Bifida. It gave her the idea to try leg braces.

She says: “At age 10 I started to discover that bandaging my legs brought a measure of relief.

“It was particularly good to tape a long, stiff piece of wood to both of my legs, locking the knees and creating some semblance of leg braces.”

As Chloe got older she realized her desires were vastly different to those of her friends, so she decided to keep it a secret even from her parents Harold, who was a ­psychotherapist, and ­Marjorie, a secretary, who have both since died.

She often used her home-made splints and leg braces behind closed doors.

Still, Chloe excelled at school, eventually going to Cambridge ­University to study chemistry.

It was while she was working at Stanford Research Institute in the US that her paraplegic fantasy really took hold.

She would daydream about driving her car into a brick wall on the way to work, or about getting back on her bike again to finish the job.

Then, aged 31, Chloe developed Fibromyalgia – pain and tenderness in the muscles, tendons and joints.

It meant giving up sports she had enjoyed, such as tennis, but it did finally give her an excuse to wear prescribed braces in public.

Chloe out of her wheelchair

“I never told anybody about my need to be paraplegic – not even boyfriends. I kept it a secret for years – it was a tough burden.

“I wasn't aware of BIID at this stage, and I had no idea that there was anybody else in the world who felt similar needs.

“It seemed very strange to me. Why on earth would anybody want to be paraplegic? It made no sense.

"I worried that I was insane, and that if I told anyone they would think I was a total freak.”

By June 2006, Chloe had reached rock bottom.

Worried about her condition, she was also struggling to come to terms with her sexuality and she sought support from a helpline.

It was here she met Danielle, 44, and they started dating.

Then in December 2006, aged 51, Chloe suffered a spinal compression injury after a skiing accident.

As a result of her injury, Chloe lost partial feeling in her left thigh, suffered severe back pain, and had to wear a back brace.

But despite all the problems this caused, Chloe still kept her BIID a secret from Danielle.

“I worried what Danielle would think. I knew I should of told her, but there never seemed to be a right time.

“I had to wear a back brace after my accident, but if anything it only intensified my BIID knowing how close I had come to achieving my desires.

“Doctors said that if I continued skiing I was at high risk of becoming paraplegic. It was like a red rag to a bull,” says Chloe, from Utah, US.

“As soon as I was able, I jumped straight back on my skis, and deliberately jumped off perilous ledges.”

Chloe's partner Danielle

Finally, in April 2007, Chloe found the strength to come clean about her urges to Danielle, who encouraged her to see a psychotherapist.

“Psychotherapy turned out to be helpful for diagnosing BIID,” says Chloe.

“I finally recognized that neither myself nor anyone else was to blame for it, my brain was just wired up in that way. I stopped feeling ashamed of my strange condition.

“My psychotherapist was very ­encouraging and advised disclosing my condition to others and not keep it a secret.

"Almost all of my friends and family have been accepting, and extremely emotionally supportive.”

With Danielle’s support, Chloe finally realized she was just as likely to die jumping off cliffs while skiing as she was to become paraplegic.

So in June 2008, Chloe volunteered for a research program into BIID.

Numerous tests confirmed that she did indeed suffer with the condition.

A ­specialist suggested a wheelchair could help control her urges and treat her disorder.

“It was a relief to finally have a ­diagnosis but I was still sceptical. I worried what people would think, but I agreed to give it a try.

“The chair arrived by ­courier while I was at work and Danielle had assembled it for me as a surprise when I came home.

"Two days later I was using it out in public for the first time.

“The first wheelchair was a cheap model, because I was unsure how effective it would be in treating my BIID.

"But it turned out to be excellent, so I bought a more sturdy model in December of that year.

"It was the closest I’d ever been to being ­paraplegic, and the happiest I’d felt in a long time.

“I use the chair more and more but continue with my active lifestyle, ditching it when I go hiking up mountains at least once a week in the summer, and when I go skiing in the winter.

“I've been told that if I continue to do both activities then I’m at high risk of becoming paraplegic – hence my motivation to keep doing them.”

Chloe's urges stem from childhood

Despite finding great relief from using a wheelchair, Chloe says there is no cure for what she has, and the only way she will stop her desires is by becoming paraplegic.

She says: “Using a wheelchair has been by far the most effective treatment. I spend 12 hours a day in it.”

Still, Chloe admits to asking her doctor about the possibilities of surgery.

“She suggested that I would be unlikely to find a surgeon to cut my spinal cord, but that I might find one willing to provide relief by severing femoral and sciatic nerves in my legs.

“Danielle was understandably disturbed when I told her what I wanted to do, but now she supports me. She just wants me to find peace with my condition.

“I am hoping that complete paralysis of the left leg alone may prove sufficient for effective treatment.

“Until then I will continue to use the wheelchair. I've ‘come out’ to everyone who sees me. Most people, from work colleagues to the local shopkeeper, understand.

“ I've had angry comments from people dubbing me a fake. But I suffer with a genuine condition.

“Even now, I still fantasize about being in a car crash or when I’m hiking near a cliff edge, friends have to lead me away from temptation.

"I may not be paralyzed, but I’m no fraud. I may have chosen the wheelchair – but it’s saved my life.”

What is Body Integrity Identity Disorder (BIID)?

Mo Costandi – neuroscientist, science writer and BIID researcher says:

“Psychiatrists thought BIID was a fetish for a long time, but in the past two years brain research suggests it is a neurological condition in which the affected limb is not represented in the brain’s model of the body.

"For cases where sufferers want to amputate healthy limbs, that is a possible explanation.

But for cases like Chloe’s it is more difficult to explain on those terms.

"A minority of sufferers want to be paralysed, or believe that they should have been born with conditions such as MS or diabetes, or that they should be blind.

So far there have been no more than 300 documented cases, the vast majority of which were documented by Michael First, the psychiatrist who originally coined the name BIID in 1998.

But if you suffered from this condition, you probably wouldn’t want to tell anyone – not even the people who are closest to you.

Sufferers have tried antidepressants and psychotherapy, neither of which seem to work.

Often, the only treatment to help someone is giving them a clean, medical amputation to stop them causing harm to themselves.

Doctors in America are currently developing Mirror Box Therapy – an approach generally used to treat people who have had limbs amputated for medical reasons, and are experiencing phantom limb syndrome.”


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