I have to stand to eat — or else I’ll choke from an extremely rare condition
A woman with an extremely rare condition who must stand while she eats and drinks or risk choking hopes surgery will help her feel “normal” again.
Elise Baynard, 25, was diagnosed with achalasia – a rare swallowing condition that affects the esophagus.
The condition has made it “nearly impossible” for her to eat or drink normally, and Elise finds herself regurgitating food or being sick up to 60 times a day.
It began in January 2020, when she suddenly struggled to swallow and felt a tight pressure in her chest.
The GP suggested it was acid reflux and prescribed her with medication – but the issues with her throat continued to get worse.
She found herself struggling to swallow foods like bread and pasta, and then even liquids started “coming back up”.
Elise was referred to a gastroenterologist – who specialist in the digestive system – in 2021 for further testing.
She felt “fobbed off” for years as her condition deteriorated, until she was finally referred to a doctor in London who diagnosed her in November 2024.
Elise still has a very limited diet — mainly consuming cereal soaked in milk and chips — and as a result, she has dropped to seven stone in weight.
She is hoping a specialist surgery called peroral endoscopic myotomy (POEM) — which widens the lower esophagus — will help her eat normally again, but she faces a “long wait” for a referral from her specialist.
Elise, a health care worker, from Dover, Kent, said: “The condition struck me completely out of the blue.
“I never had any problems with swallowing before.
“I have good and bad days, but I never know which it will be.
“I can’t sit down when I eat, I have to stand up, so the food actually goes down.
“One side effect is an oesophageal spasm – pain in my jaw, neck and back.
“It literally feels like having a heart attack.
“Some days I’m sobbing on the floor in pain.
“It’s not a death sentence, but it’s no way to live.”
Elise had just moved into her new flat in Dover, Kent, in January 2020, when her health issues began.
At first, she felt a tight pressure in her chest and struggled to swallowing food or to burp.
The GP suggested it was acid reflux, but medication wasn’t helping.
She was eventually sent for an endoscopy – a camera down her throat – but the results came back normal.
Elise was referred to a specialist in January 2021 but felt “let down” by a lack of communication.
“I never met the specialist in person, it was all over the phone,” she said.
“All the while, my condition kept getting worse.
“There were less foods I could eat — I was vomiting food daily.
“I can’t eat things like bread or pasta because it gets stuck, and I end up regurgitating it.
“One day, I was sick about 63 times.
“Then it was liquids I couldn’t swallow.
“I’d wake up in the night for water and it come straight back up.
“I was rapidly losing weight and developing a fear of eating.”
After going and back and forth with the doctor, Elise was referred to a different specialist in London in November 2024.
The doctor “immediately” recognized her symptoms as achalasia.
They performed a manometry test to confirm the diagnosis — which involved examining the muscle movement in the throat.
In people with the condition, the esophagus muscles do not contract properly and do not help food go down towards the stomach.
Elise said: “There is no activity in my throat – it’s basically broken.
“They don’t know why it developed.
“It could have been genetic or stress, or a dormant virus.
“There’s no way of really knowing.
“It was good to finally have a diagnosis.”
Elsie has done lots of research and believes her best chance at eating “normally” again is undergoing a procedure called peroral endoscopic myotomy (POEM).
It involves cutting away muscle along the lining of the lower esophagus — widening the space for food to pass into the stomach.
Without it, Elise fears she won’t be able to live a “normal” life again.
She said: “I have to wait for my specialist to refer me for the procedure.
“But it took years to get a diagnosis — I don’t know how long this will take.
“I’m desperate for the procedure.
“It’s always on my mind and I’m developing a fear eating.
“It affects every part of my life.
“I can’t go out for food and drinks with friends in case I’m sick, or I have to make sure I’m always near a bathroom.
“There is very little I can eat, and I stick to very soft snack foods, like milky cereal or chips.
“I really want to shine a light on this condition because it’s hard to diagnose.
“Also, hopefully it’ll push the doctors to act more quickly.”
