EXCLUSIVE: 'I'm fed via a tube and people assume it's bad - but it's changed my life for the better'
A young woman who has been fed via a tube for the last 13 years of her life has shared how she overcame the challenge of her diagnosis and learned to love it
Eating food and consuming drinks are actions many of us may take for granted each day, thinking little of our ability to tuck into a takeaway or grab a beer with friends.
But for some, these everyday actions can be a real struggle or simply aren't even a possibility.
Faye Bingham isn't able to enjoy a slice of birthday cake or tuck into a cheeky Nando's with her pals as she's got Avoidant Restrictive Food Intake Disorder (AFRID) and has to be fed via a tube.
The 26-year-old from Kidderminster has been tube feeding for the last 13 years, after struggling with malnutrition and ending up in the hospital as her organs were shutting down.
To mark Feeding Tube Awareness Week, Faye spoke to The Mirror to highlight what life is really like with a feeding tube, after new research by Talking Tube Feeding found that nearly a third of UK adults had never heard of 'tube feeding' before.
Faye was diagnosed with AFRID and it was determined a feeding tube was the best option for her
Faye shared how her issues with food began at an early age, and due to her autism, it was quite sensory-based, as she struggled with the smells and textures of food and often just wouldn't eat as a result.
But her quality of life has vastly improved since getting a feeding tube as it allows her body to get the nutrients it needs.
"I had to stay in hospital for quite a long time," she said. "And it was ultimately deemed that it would be better if I could have a feeding tube.
"I've got a nasal gastric feeding tube, it goes up through my nose and into my stomach and I'm fed via a pump connected to the tube.
"Everyone's different and has their own tube feeding care plan, but I am hooked up to the pump for about 12 to 14 hours a day, so it's not like I get given a meal, the formula is continuously fed into my system."
Faye has grown to love it
She continued to explain how using a feeding tube impacts certain areas of her daily life.
"When I'm hooked up it's not ideal," she said. "I have to carry around the pump to feed and it's quite restricting as it's like having an extra backpack with you.
"At these times I can't do sports, but I try and manage my timings as when I'm unhooked I can do so much more - I can go swimming, play my favourite games and get on with life like any other normal person."
There are also certain steps she has to take to keep the feeding tube clean and ensure the tube remains in her stomach and not in her lung.
Another downside is that Faye often gets mistaken for being a cancer patient because of her tube, which makes her feel uncomfortable.
"With a nasal tube, it's directly on your face, taped to your cheek so it's very visible for people to see," she explained.
"People's reactions are really varied, literally just the other week someone came up to me to ask if I was 'winning my battle' and the presumption is that I've got cancer and I respect that it came from a really caring point of view, but it's not something I have, so it's harder to get comments like that because a lot of myths surrounding feeding tubes are still quite prevalent."
Faye has since set up a business making adapted feeding tube accessories
And while Faye hasn't had any outright ugly comments made to her face, she claims many people just stare "awkwardly" without saying anything when they see her.
As a teenager this made her feel very 'self-conscious', but the young woman has since learned not to care what others think and now says she 'loves' her tube.
"I remember feeling really self-conscious in my teenage years about what people might think because you get a lot of stares. I actually prefer people to come up and ask what it is rather than doing that awkward British glancing thing.
"Being older definitely helps because you start to learn not to care what anyone says or thinks."
But despite her struggles, Faye is adamant having a feeding tube isn't a bad thing as it's changed her life for the better.
"Getting a feeding tube was a drastic change and there's so much stuff I have to do to maintain it, but honestly, it's all been for the better.
"I was really ill in hospital and wasn't able to join in with my friends or go to school. When I first got the tube it was nice to have the energy to actually live. Without it, I'd still be very sick."
Faye has also managed to use her feeding tube journey to create a fulfilling career, founding a business called Tubie Life, which she has been running for the last three years.
The aim is to provide "freedom to feeding tube users" through a range of adapted tube feeding accessories, including backpacks, feeding tube covers and stickers for pumps as well as patterned 'tubie tape' which covers medical tape.
"I set up a small business making adapted feeding tube accessories so that I
can show off my style and personality in my medical device. It's all about self-expression.
"The accessories can also help make life a bit easier, it takes time to set up a feed, ensuring you have adequate nutrition and keep hydrated, so having an adapted backpack for on-the-go is amazing," she added.
