Omagh woman’s food disorder: “I can’t eat and it’s killing me”

“I have already planned my funeral… if I don’t get help, then this will be my death sentence.”

Weighing just six-and-a-half stone, Omagh woman Clare Greenaway can no longer climb a flight of stairs due to severe muscle deterioration. Last month, she was officially diagnosed with Avoidant/Restrictive Food Intake Disorder (ARFID) – a relatively new and poorly understood eating disorder marked by an intense fear of the consequences of eating.

For Clare, this fear has haunted her since childhood, growing worse during the pandemic.

“We (ARFID sufferers) have ‘safe foods’ we eat daily, because we’re scared of choking or getting sick,” she explained.

“Even with medication, if I’m given something I don’t recognise, I just break down. It’s so hard to come to terms with, especially when there is no support and nobody wants to listen.”

Clare survives on a dangerously low daily intake of around 600 calories – less than a third of what’s recommended for a woman in her 40s.

Her meals include a handful of sweets in the morning, crumpets, crisps, and a slice of bread – all consumed with trepidation.

Though her symptoms stretch back a decade, Clare believes the roots may lie in childhood illness.

“I had problems with choking when I was younger and was a picky eater. But in the generation I grew up in, eating disorders weren’t talked about – so this was never picked up.”

Her husband Derek has watched Clare suffer for years while health teams passed her between departments without taking responsibility.

“Clare has learning difficulties and other conditions. A Harvard study shows a strong link between ARFID and autism or OCD, but doctors keep saying she has ‘traits’ without offering a diagnosis. Nobody wants to take the lead.

“That’s why they keep passing her back and forwards between the eating disorder team and the mental health team, because they don’t have any answers and they won’t refer her for the proper treatment.”

Clare’s ARFID diagnosis came only after she was hospitalised following a 31-hour period without eating, a breakdown in which she lost ten pounds in weight and left her dangerously weak.

But the diagnosis brought little relief.

“It was only after this that they actually listened to me and I went for an assessment where they finally diagnosed me with ARFID,” said Clare.

“But they told me they had no funding or facilities to treat ARFID.

“My only options were to pay over £700 for a private assessment or travel to England for treatment.”

The condition has taken its toll on the entire family.

“We don’t have a life,” she admitted. “I feel like I’m fading away. I try every day for my kids, but it’s hard.

“To be honest, I’ve planned for my funeral because if this continues I’m not going to be here.”

Derek added, “I always thought I was mentally strong. But this is breaking me. And it’s worse for Clare.”

Now the couple are calling for urgent recognition of ARFID and access to treatment in the North.

“People in Northern Ireland are always the last to get proper healthcare,” Clare said.

“But I’m determined to keep going – not just for me, but for anyone else struggling in silence.

“If you’re suffering with ARFID in Omagh or anywhere else, come to me. Let’s push for change together.”

The Ulster Herald contacted the Western Health & Social Care Trust in relation to Clare’s concerns.

However, no response had been received by the time of going to print.

‘It’s so hard to come to terms with, especially when there is no support and nobody wants to listen’