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Body builder 'embarrassed' by life threatening condition he tried to hide for years

Liverpool Echo logo Liverpool Echo 22/04/2019 Rachael McMenemy

A bodybuilder was so 'embarrassed' by his life threatening condition, he tried to hide and ignore it for years.

Ben Macfaralane was diagnosed with Crohn's disease - a chronic illness which leaves him in agonising pain, partly caused by rectal bleeding.

The uncomfortable symptoms often leave the Dad-of-two from Bootle in desperate need of a bathroom at a moment's notice.

The 39-year-old says the invisible illness, which hospitalised him eight times last year, has taken an extreme physical and emotional toll.

a man smiling for the camera © BenMacfarlane

 

Ben was diagnosed at 18 after being rushed to hospital when his weight plummeted suddenly to eight and a half stone.

He told the ECHO : ”I lost lots of weight, I never noticed that, you don’t notice it yourself.

"I had lots of pains and bleeding all the time, but I just thought it was piles at first, I’d never heard of Crohn's .

“As soon as I got there [hospital] my specialist said ‘you’re coming in straight away’. He said ‘you’ve got Crohn's and you’re really sick’.

“I had lost a lot of blood and needed two pints of blood straight away and was on a feeding tube.”

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That prompted a six week hospital stay and a life of regular visits for intravenous antibiotics, steroids and morphine to help with the intense pain that comes with the condition.

Ben added: “I was in the hospital eight separate times last year, for two weeks at a time.”

“It does mess with your mental state as well."

During particularly bad flare ups Ben’s weight plummets at an exceptional rate, about a stone in just a week.

In 2017 Ben was forced to have a large bowel resection - meaning doctors removed a section of his gut that had become badly damaged by the condition.

'Embarrassed and self conscious'

Ben said he has been "embarrassed" by his condition for years because it left him 'skinny' and unable to do the same things as his friends.

“All my mates were fit, healthy, big strong lads. I was a little skinny kid in the corner," he said.

He added:  “People think lads don’t worry about their weight, but I think they are  worried more than woman are. You can’t put weight on when having a flare up. It ruins your body.”

When he was first diagnosed Ben tried to hide the severity of his condition, thinking he could force himself to live a 'normal life'.

He said: "I never took it [Crohn's] seriously when I was younger. I tried to keep up with my mates and a lot of people who have it at the same age probably don’t take it as seriously, they're not aware how bad that is at the time.

“I used to say I could go out when I couldn't, I’d be in pain and need the toilet and people would say I was ‘letting them down’ if I missed anything.”

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The impact of Crohn's disease on every day life

Dad-of-two Ben is plagued by horrendous symptoms that mean he often has to rush to the toilet.

He said: “I bleed lots, I don’t mean a trickle, I mean clots of blood coming out, it’s graphic but it needs to be told. People don’t understand it."

The window cleaner from Bootle also explained that he lives in terror of the condition making him a higher risk fo r developing cancer.

He said: “I wake up with blood, I get scared, panicking, thinking 'what’s this? Will it lead to cancer?'

'Is this Crohn's going to go further ?' - It’s in the back of my head every day.”

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Ben's symptoms are severe and he has said there's no one set of symptoms to explain Crohn's because it's "not a textbook illness".

He added:“I can’t plan anything, you just can’t because don’t know what’s going to happen. I used to beat myself up."

a person posing for the camera © BenMacfarlane

'But you don't look ill'

Every day Ben battles against the stigma of peoples’ expectation of what a disability should be, he says.

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He said: “You don’t walk around with a sign saying you’ve got anxiety or depression , it’s the same with Crohn's, it’s quite frustrating."

Even doctors have told Ben he looks well while they're meant to be treating him during a flare up, leading him to doubt the severity of his own condition.

He said :"I’ve played this illness down myself and when doctors say ‘you don’t look sick’ you start to doubt yourself and your own illness.

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He said: "It can be a life threatening this illness, people don't realise. They just think you might have the runs, but I don't get rushed to hospital and given two pints of blood for the fun of it.”

One of the most common forms of discrimination Ben has faced has come when he has tried to use disabled toilets while out - his illness means he often needs to get to a bathroom urgently.  

Ben's body building physique makes people even more convinced he's not really ill, he says.

a man holding a microphone: Ben Macfarlane, 39, speaks out about what it's like to live with an invisible illness. He has Crohn's disease. © Chrohns and Colitis UK Ben Macfarlane, 39, speaks out about what it's like to live with an invisible illness. He has Crohn's disease.

He told the ECHO : “I have had looks. Words can be very nasty, but they [people] can be equally as nasty when they look you up and down as if you’re a piece of c**p on the floor.

"But people do that a lot."

He added: “I have come out and had ‘that guy goes to the gym why is he using the disabled toilet?',  but I’m in pain. I'm in agony."

"The pain I get in my stomach and bowel - it physically hurts. I do need to clean up after myself. The blood can explode out at times. But again, people are probably guilty of looking at someone and not seeing it," he said.

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In a bid to try and live his life to the fullest Ben has now started amateur body building.

He says he wants to show other Crohn's sufferers that anything is possible and they shouldn't "write themselves off".

He told the ECHO : “I wanted to do it for personal reasons to prove to myself that I can do something and block the illness.

"It’s very labour intensive but I want to do it for myself and show people ‘don’t let it put life on hold.’”

a man standing in a room © BenMacfarlane

Not every disability is visible

Now, Ben has become an ambassador for the campaign ‘Not Every Disability is Visible’ by the charity Crohn's and Colitis UK.

Research by Crohn's and Colitis found that over 60% of people with the conditions had suffered verbal and physical abuse when they went to use a disabled toilet.

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Through the Not Every Disability is Visible campaign the charity are calling on companies, including supermarkets and restaurants to change signs on disabled toilets to highlight that people may be disabled without looking visibly unwell.

 

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