Tuesday, 16 July 2013

"I don’t really need a wheelchair... but I would just love to be disabled" - Rare condition makes Chloe want £16k surgery to stop legs working

  • Made pretend splints and tried to get into accidents to end up disabled
  • Lets her understanding wife Danielle do all the chores around the home 
But wheelchair-using Column Idol winner says 'she is just being lazy'

Setting the wheels in motion ... Chloe Jennings-White
Barcroft Media

BEING stuck in a wheelchair and forced to wear leg braces is most people’s idea of hell – but not for Chloe Jennings-White.

The able-bodied 58-year-old longs to be PARAPLEGIC. She even wants to have totally unnecessary spinal surgery to stop her legs working.

Not even Chloe understood her strange, long-held desire until five years ago.

That is when she was diagnosed with Body Integrity Identity Disorder.

It is a very rare psychological condition. BIID makes sufferers feel they want to be disabled.

At home Chloe uses a wheelchair, even though she can walk. But that is not going far enough for her.

Speaking exclusively to The Sun, Chloe says: “My dream is to find a surgeon who will operate on my spine to stop my legs working.”

In 2010 she found an overseas doctor willing to cut her sciatic and femoral nerves, meaning she would lose all sensation in her legs, but at £16,000 it was way beyond her means.

ABLE-BODIED Chloe Jennings-White reveals rare condition BIID makes her want surgery to stop her walking

She says: “I’ll never be able to afford it, but I know I won’t regret it if I ever can, and I don’t know why it upsets people.

“It’s the same as a transsexual man having his penis cut off. It’s never coming back, but they know it’s what they want.”

Chloe has now bought a wheelchair on the internet and uses it to go about her everyday life.

She says: “When I first sat down in the wheelchair, it just felt so right. It felt like somewhere I belonged.

“Something in my brain tells me my legs are not supposed to work.

“Having any sensation in them just feels wrong.”

London-born Chloe first realised she was not like other kids when she was only four.

She had just visited her Aunt Olive in Thatcham, Berks, who had been in a bike accident and used leg braces.

Chloe recalls: “I wanted them too. I wondered why I wasn’t born needing them and felt something was wrong with me because I didn’t have them.”

She kept this weird wish to herself, but when she turned nine Chloe decided to do something about it.

First she avoided a polio vaccination at school.

“There was an epidemic and some kids ended up in leg braces,” she says.

“I dreamed I might end up like them, but didn’t.”

Roll play ... Chloe with her wheelchair even when preparing for a shower

Chloe then deliberately pedalled her bike off a 4ft acting stage at Hampstead Heath, landing on her neck.

She escaped with bruises, but was suddenly filled with terror over what she had done.

She did not want to die or damage anything other than her legs.

“It was a nine-year-old’s stupidness,” she says. “I could have broken my neck or died.”

Even so, she carried on flirting with danger, playing risky school sports and climbing trees.

She broke five bones between the ages of 12 and 16.

“I felt happy even just risking my legs,” she admits.

She did not dare tell her late parents, Harold and Marjory, who told her off every time she got injured.

In fact, terrified of telling anyone, she lived out her fantasy in secret, pretending to be disabled whenever she was home alone. “I’d bandage up my legs and make pretend splints out of an old metre-ruler and, my favourite, a piece of track from a model railway,” she says.

“I knew it was strange and others didn’t do it, but it was the closest I could get to how I was meant to be.”

Chloe kept these make-believe sessions to herself until she was 22, when she confessed to Ian, her first serious boyfriend. She says: “I’d moved in with Ian and he was so easy-going I decided to show him.

“He asked, ‘Why do you do that?’ I told him I liked it and he just put it down to me being odd. He knew I wasn’t like other people.”

The relationship ended 18 months later when research scientist Chloe, moved to California to work at Stanford University.

By 1991 she had moved to Utah and started skiing at local resorts — heading recklessly down the riskier runs in the hope of damaging her legs.

“It was perfect,” she says. “I sometimes crashed on purpose, but the lesson from my bike stopped me going too far.”

Then in June 2006, bisexual Chloe met future wife Danielle, now 44.

“We fell in love instantly,” she says. “On our second date she proposed and I said yes, although I hadn’t told her about my legs.”

A month before the wedding, in December 2006, a skiing accident really did leave Chloe with a back injury and a perfect excuse to get leg braces.

She admits: “I didn’t really need them, but I decided to use it as a reason to get some. I wouldn’t need my pretend splints any more.”

Flirting with danger ... Chloe Jennings-White skis in Utah, in hope a crash will crock her legs

Scared that Danielle would be shocked when the braces arrived, Chloe finally confessed all.

She says: “I told her it had been going on my whole life, and I couldn’t stop. She was shocked but vowed to stand by me when I told her it was the only way I could be happy.”

While looking for leg braces online, Chloe read about BIID for the first time.

“I knew it was me and it was a huge relief,” she says. “I wasn’t a freak — there are hundreds of others like me.”

Desperate to know for sure, she took part in a BIID research study with psychiatrist Michael First, who diagnosed her in spring 2008, recommending a wheelchair.

At first Chloe was sceptical, saying: “I wanted to really be a paraplegic. I didn’t want to pretend any more.”

She agreed to try and in July 2008 came home from work to a surprise from Danielle, who’d assembled a wheelchair they ordered together on the internet.

“It was magical,” she says. “It changed everything.

“But I was worried about what people would say because I didn’t need it. I decided to use it only in private.” She started living as a paraplegic at home, with Danielle left to do nearly all the household chores.

“Part of her wished I wasn’t in the wheelchair, but she knew it was the only thing that helped, so she played along,” says Chloe.

Even so, at times Danielle got annoyed.

On the road ... Chloe Jennings-White packs her wheelchair in boot of her car
Barcroft USA

“Mowing the lawn had always been my job and now she had to do it. She’d say: ‘You’re paraplegic now, so you can’t, can you? I’ll have to do it’.”

Then in July 2009, Chloe was involved in a 70mph car crash, but somehow survived with only cuts and bruises.

She says: “It was a golden opportunity because everyone knew about the crash but didn’t know about my miracle escape.

“I suddenly had a reason to use the wheelchair everywhere, even at work.”

She continued skiing and loved hiking where best friend Dave would push her along trails through the Utah mountains. “I didn’t feel bad because most wheelchair users, like people with multiple sclerosis, are able to get up sometimes,” she says.

“It’s just my chair gives me psychological relief, instead of physical.”

With a new-found confidence, Chloe began writing for BIID support group and eventually told friends and family that she had BIID.

She received hate mail and even death threats via the web, but says all but two friends have been completely supportive.

“A woman I dated immediately before I met Danielle stopped our friendship completely, because she said she’d never understand it. I cut her off,” she says.

“I know it sounds crazy to people without BIID, but it’s what we feel. I don’t want to climb Mount Everest but some people do, and I don’t criticise them.

"Chloe is just being lazy" SUN Column Idol winner JESSICA LONG, a wheelchair user, says:

“As someone who has a disability and needs mobility aids and the help of others, I cannot understand why someone would VOLUNTEER for it.

Shocked ... Jessica Long

What Chloe fails to understand is that being in a wheelchair isn’t a disability. Using a wheelchair comes as a result of a disability.

I have no idea how Chloe’s wife even begins to comprehend this. Never mind her selfishness in trying to get into accidents with no regard for anyone who could be involved.

Comparing her “condition” to MS is just plain wrong – although sufferers may not need a wheelchair constantly, they need it at least part of the time.

I understand disability and I understand mental health issues. What I cannot understand is laziness.

This is a case of Chloe being lazy and wanting to be looked after by a poor sod who is too blinded by love to see she is being taken taken for a mug.”

Source: The sun

*Well, its hard for me to understand this "condition" that makes her want to be disabled. But one thing is for sure as the saying goes "you never know what you have until you lose it". By the time she becomes disabled, then she would know what's up...but then it would be too late.

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