An anorexic charity worker who fears she will be killed by the condition says she was sectioned and left covered in faeces when she tried to get specialist care.
Amy Ellis, from Broughton, Flintshire, in Wales, said that despite decades of GP appointments and visits from mental health professionals she's never received appropriate help for the illness.
Instead, Amy, a charity worker and artist, says she's been told her symptoms are depression or a "way of life" and her protests to seek proper care lead her to an "undignified ordeal".
The 42-year-old explained how she was sectioned at a unit which didn't specialise in her condition and was left for hours on end in her own mess as she waited for her commode to be changed, Wales Live reports.
She believes her issues with food stem from childhood trauma, with her earliest memory of eating disorders coming at around four years old.
She said: "Then I didn't realise I had a problem with food as such. I didn't know or understand it was an illness but I realised I had a bad relationship with food.
"Meal times became a nightmare because I didn't like a lot of food. I just thought I was a bad person and finicky."
Amy revealed she was bullied while at junior school for having free meals instead of packed lunches, as her family couldn't afford it, and this contributed to her negative relationship with food.
"When mam could later afford [packed lunches] I would still be bullied for not having the same quality of food as the other children," she said.
"I tried so hard to try and make a life for myself because I've always been interested in charity. I moved to London and travelled abroad. However my illness kept boomeranging me back home. I would try again and again.
"Then I was going back to the mental health team and they would say again they couldn't help me.
"I remember one GP telling me they didn't think they could help me and that this was 'just how you're going to live'.
"I was battling with doctors who said I was just depressed and handed me anti-depressants. I kept saying: 'I'm not depressed' [and] that these were symptoms of my eating disorder.
"I look back at photographs of myself in my 20s and I realise that I was quite pretty and I wish I could go back to that. Then I [remember] I'm still miserable in those photos and still suffering.
"Even if I knew as much [about eating disorders] then as I do now I would still be destined to end up at this point because there is no help.
"It's not a way of life and it's not a choice. It affects a spectrum of people from people like me to somebody morbidly obese. It's the sick anorexic mind.
"You can be overweight and be anorexic. It's about control and being in this world that you cannot make sense of. You are grasping at anything to take control of your life. At the beginning you think you're in control but you're not.
"You delude yourself until you get to the point like me where you realise the illness is bigger than you and you are begging for help – but there is nobody there to help."
Amy worries many other people like her self are being misdiagnosed for having symptoms which doctors mistake for their eating disorder, something she says happened to her in 2015.
She explained: "I started getting terrible pains in my stomach and all up my back. I went to my GP and he said it was laxative abuse and constipation. It went on weeks and weeks.
"I remember it was Boxing Day. I woke up in the most excruciating pain – I've never felt pain like it.
"We had to call an ambulance and went to hospital where they did no tests and I was told it was due to my laxative abuse and my eating disorder. This carried on for a year – I was in and out of hospital."
Finally around 12 months after her symptoms started Amy said a scan showed that her gallbladder was infected and close to rupturing.
Following life-saving surgery Amy said: "[The surgeon] said I was a week away from my gallbladder bursting and that I would have died from that. The reason it was my gallbladder is because I was purging and binging on bad food which is bad for your gallbladder.
"They should have known that because of my eating disorder something bad was happening."
Amy started her own TikTok account - @SavingAmy – to raise awareness of her condition.
The artist claimed the facilities at Heddfan didn't cater for her specific needs.
"Staff would be eating my food in front of me," she said.
"They reported back to say I was getting stressed so I wasn't allowed in the kitchen anymore so staff had to prepare my food and bring it to me."
Amy said while at Heddfan she lost hair and nails due to the stress. Since leaving she said her mental health has followed a downward trajectory, adding: "I never recovered from being in Heddfan. I came out of Heddfan with more OCDs and my relationship with food worse than ever. I didn't know how to live and my life was built around my OCDs and food. Heddfan was two years ago and I don't remember life before it."
Amy – along with her friends and family – is now raising money to secure help at The Priory Group which provides innovative life-saving treatment to eating disorder patients. It is one of the few places in Europe trained in specialist therapies such as mantra, dialectical behaviour therapy, and many more.
Amy said raising money to get to The Priory is physically very draining for her but she believes it is her only hope of recovery. You can donate to Amy here.
She said: "They have everything from showing me how to walk again, monitoring me, teaching me how to let go of my OCDs, and how to get my life back. I don't want to go there because it's private and there are nice rooms. If it was free on the NHS I wouldn't be going through fundraising, which for me is hard and is taking over my whole life while I'm dying. It's £7,680 a week to get there and I need to be there for six months (around £200,000 in total) and then I need aftercare on top of that.
"I want to get better there and then carry on helping other people," she said. "I want SavingAmyCymru to turn into a charity. I know I can reach so many more people than eating disorder charities to help people because I'm already doing it through my TikTok. But helping other people has got to start with me. I've got to raise this money and get better. I cannot help others from the grave."
A Welsh Government spokesman said: “We continue to increase our investment to improve services for eating disorders as part of our wider approach to improve mental health and emotional wellbeing.
"Most people who need to access eating disorders services, including in-patient care, will receive this care in Wales however we are committed to work with NHS Wales to scope the feasibility of a specialist eating disorder unit in Wales.”
