A young woman has spoken out to raise awareness of living with feeding tubes and how it has affected her life.
Leanne-Sydonie Goodlad, 22, was diagnosed with Ehlers Danlos Syndrome, a rare condition affecting her joint flexibility and skin.
The student has suffered with migraines, chronic pain and fatigue throughout her childhood.
But her health has further deteriorated in recent years. Doctors told Leanne-Sydonie she has Crohn’s Disease in 2018 and she was diagnosed with Gastroparesis a year later.
The conditions cause nausea, pain and bloating after eating.
Stuck in a flare-up for nearly a year
Leanne-Sydonie eventually needed feeding tubes to make sure she got the right nutrients her body needs.
“It was sudden,” she said. “We couldn’t get it under control, it wasn’t responding to steroids or anything and I was in a flare for about 11 months, which is really long.
“Once we managed to get that tapered down, I got sick in 2019.
“I wasn’t able to hold down any food or much liquid. I left hospital after seven weeks with a diagnosis of Gastroparesis.”
‘I was distressed I wouldn’t be able to have Christmas dinner’
Leanne-Sydonie initially tried different medications but they did not improve her health.
It was coming up to Christmas when she underwent the procedure to have feeding tubes fitted which she found “distressing”.
“It’s really difficult because it’s a big life change,” she said.
“When I was diagnosed I was crying nearly every day having to accept this was going to be my life.
“Especially with Christmas coming up, it’s a big food-centred event.
“I was so distressed at the idea that I wouldn’t be able to have Christmas dinner.
“Until you have the ability to eat taken away, you don’t realise how much food is a big social thing.
“You always go out for coffee with friends or drinks and nibbles. There’s Christmas, Easter, all these big events centred around food.
“It feels like that whole world is being taken away from you.”
People assume you’re receiving end-of-life care
At the time Leanne-Sydonie’s Nasojejunal and Nasogastric feeding tubes were visible on her face.
During lockdown, she needed to learn how to put one of the tubes down her throat herself so she didn’t have to go to the hospital each week.
She says people can often have preconceptions of her condition assuming you might be suffering from an eating disorder.
“On the other hand, they might assume you have cancer or because people don’t see it often, they think it’s end-of-life care,” she said.
“If you get a feeding tube you’re ‘maybe going to die soon.’
“They might know of a granny who had dementia and was unable to eat and died a few months or years later, but that isn’t the case for most people who have feeding tubes.”
‘You never really know what’s going on with someone’
Now, she has had a new feeding tube fitted which can’t be seen outside her body but works in the same way.
But it still makes a noise which can confuse people.
She added: “I have to carry a machine pump with me, for 24 hours, and it constantly makes noise.
“I have to walk into seminars and lectures and the pump is making the noises, people are looking around trying to find where the noise is.
“Even though it’s not as obvious on my face, it’s still there.
“It’s a really weird feeling trying to manage your health and university anyway, but having to deal with something so basic and the complications that come with that, along with the stress of assignments and everything, can be quite overwhelming.”
Leanne-Sydonie has now applied to her university for permission to work from home so she’s more comfortable studying her English and Scots Law degree.
But she feels it’s important to raise awareness of her condition and the challenges of living with feeding tubes.
She added: “I want to put an emphasis on invisible disability and the fact that you never really know what’s going on with someone.”
Pinnt (Patients On Intravenous and Nasogastric Nutrition Therapy) is a charity which offers support to those adapting to life on home artificial nutrition. If you’ve been affected, you can call them on 020 3004 6193