Trigger warning: Eating disorders
Today, as part of Eating Disorders Awareness Week, we speak to Tom Capeling – who helped care for his daughter when she developed an eating disorder.
People who develop an eating disorder face an uphill struggle for recovery – and so do their loved ones.
Tom Capeling fought battle after battle to save his daughter from the condition that was ruining her life and, only now she is in recovery, can he finally relax.
“You might not think of yourself as a carer, but whether you are a parent or a loved one, living with someone with an eating disorder can be awful,” said Tom, 59, from Sunderland.
“It wants that person to be alone and isolated and makes them do anything to turn others away. It’s like living with two people – the person you love and someone else hidden inside.
“You catch glimpses of the person you know, but the rest of the behaviours are the disorder. You have to remember the person you love is still in there and try to get through to them.”
Family heartbreak
Tom’s daughter first developed an eating disorder at 12. For two to three months she refused to eat and even rationed her drinks. The family found it heart-breaking to deal with.
“Luckily, it didn’t last long. It was awful at the time, because she was totally out of control, but she managed to fight off the feelings by herself,” said Tom.
“But, when it happened again at 18, she just didn’t have the strength to fight back. Her feelings were just too powerful. Within three months she was admitted to hospital.”
The teenager’s second eating disorder took her whole family by surprise. Indeed, it started as stomach cramps and pain – which she tried to control by reducing her food intake.
“This time around she wasn’t hiding anything from us. She told us about the pain and explained that if she ate less, then she experienced less pain,” said Tom.
Tests at the Freeman Hospital, however, ruled out any stomach problems. Instead, it was determined it was actually an eating disorder. Within months she was in a TEWV hospital.
First steps to recovery
“She had been open and honest this time, not hiding anything – at least first,” said Tom. “This was a very uncommon way for an eating disorder to present – very atypical indeed.
“Because she was atypical, it’s difficult to say what started it off. It was just a mystery pain. Then, over time, it presented in a normal way. There was no specific trigger point at all.
“As the months went on, things got worse. The eating disorder was always ahead of us. It was like an inner voice in my daughter’s head, always controlling everything she did.
“The voice is very manipulative, very clever. If someone eats, the voice punishes them – or congratulates them on missing a meal. There was no way to win against the voice.”
Tom’s daughter was eventually admitted to Birch Ward, at TEWV’s West Park Hospital in Darlington, after her condition deteriorated. It would not be her only time as an in-patient.
“People with an eating disorder want to push everything away. They lie, they hide, they make things difficult for those who love them. But it’s not them, it’s the illness,” said Tom.
“When my daughter first went in to hospital, we thought that was it – she would be made healthy. But that’s not what happened – it’s not a quick fix. It can be a long, long haul.
“Parents might not see themselves as carers, but they are. If they want to help a loved one, they need to get to know the illness better; to understand how to try and really help.
“The earlier an eating disorder is caught, the more chance there is of a faster recovery and not ending up in hospital. As a carer you need to find out as much information as possible.”
Support needed for carers
Tom’s daughter was hospitalised five times in four years due to her condition, spending a total of a year as an in-patient at West Park, a Glasgow unit and the RVI in Newcastle.
At first she fought the sections – as the voice in her head didn’t want to be confined – but during the fifth hospital stay something changed. She finally accepted the offer of help.
“She said it was like a switch had been turned on to give her the strength and power to fight the illness,” said Tom.
“It was unreal. To see her want to fight this, to want to get better, it was something we had all hoped for.
“At first we couldn’t believe it, but then she kept it going and went beyond any targets. That’s when we realised she really meant it. We could see her improving all the time.
“It was a daily fight for her for almost a year after she was finally released from hospital, but now she says she doesn’t have the voice at all. It is amazing and we are so grateful.”
Tom’s experiences have led him to join The Lived Experienced Advisory Group – run by TEWV and our partners Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust – to help steer the course of future support for both patients and carers.
Looking to the future
Group members provide feedback to staff on what it is really like to live with people with an eating disorder – as well as raising awareness of the need for individual care and help.
“We have to be honest about this – carers need help too. Looking after someone with an eating disorder is a battle, and we need real support during this hard fight,” said Tom.
“But it is possible to get through. I have hope for the future now – and my daughter has hope too. It’s taken a while, but she is getting her life back together and has her own flat now.
“Some people might say that an eating disorder is always with you, but my daughter doesn’t. She feels fully recovered – which shows you can recover and go back to a normal life.”
