An estimated 200,000 in Ireland suffer from an eating disorder. Amy Lewis looks at how the path to recovery can affect friends and family members.
As Eating Disorder Awareness Week rolls around for another year, we are once again reminded of the statistics: an estimated 200,000 people in Ireland are currently suffering from an eating disorder.
Yet, the figures do not take into account the many parents and other carers who are fighting a daily battle to help their loved ones through recovery. These people do not seek or need awareness, rather they need knowledge, support and better services for their loved ones.
Dublin woman Paula Crotty is one such person. Her journey began three years ago when she first noticed signs that her 20-year-old daughter was developing an eating disorder.
“A few months before we realised she had a problem, she had said that her mood was low and she had gone to her GP. When we realised she was having trouble with an eating disorder, we talked to her but the decision to get help had to be hers as she was over 18,” she explains.
Paula’s daughter (now 23) sought treatment and was later admitted as an inpatient in a public hospital in Dublin. After almost a year, she was discharged and the family were told by hospital staff that they had done all that they could to help her. However, concerned that her daughter was still critically unwell, Paula and her family fought to get the treatment that she required in the Vincent’s Square Eating Disorder Centre in London where she remained for 10 months.
“We went to visit her at least every other week. We had family therapy and meetings with the medical team. It put a lot of extra strain on the family but we felt like something had been done. She didn’t come back better but she certainly came back stronger,” she says.
For Paula, getting this specialist help was the difference between life and death for her daughter, who is still taking each day as it comes but is now home and back in university.
“The services in Ireland are extremely limited,” she says. “People are dying every year as a result of eating disorders. If I were relying on the healthcare system here, my daughter would have been one of them a year and a half ago.”
Paula added that it is extremely important for parents in similar situations to look after themselves and communicate honestly with their other children.
Recent figures from the national eating disorder association Bodywhys show that 47pc of calls come from concerned parents and friends, while 16pc of emails come from the same group. However, carers come in many forms.
“Eating disorders don’t discriminate. They affect everyone from every background, sex, race or age,” says Trish Shiel, clinical manager of the Eating Disorder Centre Cork (EDCC). “We’ve had mothers with grown children; we have people coming with their partners.” Trish recommends the same approach for all carers: have compassion and try to understand the illness.
“The most important thing is to get as much education as you can on it,” she says. “You also need to separate your loved one from the illness so that you aren’t seeing the behaviour as the person. This is a full-blown mental health condition. The person may be functioning but they are still going through an incredibly difficult time.
“Carers also really need to mind themselves… A carer can become obsessed with the illness and burn out.”
When a carer becomes invested in a person’s recovery, it can often cause conflict within a family. Debbie Howard (34) from Bangor, Co Down, has witnessed this, both on a personal level and in her role as a psychotherapist specialising in eating disorders.
“I had an eating disorder when I was younger and the services here were pretty awful at the time. I was treated in London as an outpatient. I would fly over every Wednesday for therapy,” she explains.
“Throughout all of that time, my mum and dad had nowhere to go. They had no idea what to do with me… They would shout or beg or plead or try to do anything because they were so scared.”
The feeling of fear among carers is understandable. Eating disorders have the highest mortality rate of any mental illness. However, despite reality, Debbie says it’s important not to be forceful. “The more you force things, the more you are pushing them away,” she says. “I would bring it up by saying ‘you don’t seem like yourself’. Then they might think, ‘maybe I could talk to them about this as they are not shouting and judging and telling me what to do’.”
In light of her own journey, Debbie also advises carers to help their loved one to find a therapist that they are comfortable with, saying that this is what saved her.
Years after her own recovery and after she became a psychotherapist, Debbie and her family discovered a programme in London for carers known as the New Maudsley Model. This skills-based programme is used worldwide to help carers understand eating disorders and support their loved ones. They received training from the facilitators and began to offer the course through their Caring About Recovery from Eating Disorders (CARED) organisation. Though based in , CARED can facilitate courses throughout the country.
“The courses help carers to think about and treat the illness in a different way,” says Debbie, who is chairperson of CARED. “If their loved one had cancer would you shout and scream if a tumour isn’t shrinking quick enough?”
Just as cancer takes many forms, so too do eating disorders. Despite having suffered from an eating disorder herself and working with clients with eating disorders as a therapist, nothing could prepare Marie Campion (62) for her daughter Jacqueline’s illness.
“It is very different to be a therapist and a parent,” says Marie, founder of the Marino Therapy Centre. “As a parent, you go straight to denial first.”
Marie also wondered if she had influenced Jacqueline’s eating disorder. However, instead of blaming herself, she applied the techniques that helped her own recovery, encouraging her daughter to talk about her feelings and reassuring her that recovery is possible.
“This language of freedom is about teaching the person that they don’t have to always live with the illness. It’s about believing in recovery,” she says. She adds that it is important to understand that disordered eating is a symptom of an internal distress, rather than the primary issue.
Now fully recovered and working as an eating disorder therapist alongside her mother, Jacqueline (27) credits this language of freedom as a huge influence in her recovery.
“The reassurance from my parents that this illness was temporary really helped me,” she says. When Marie was unwell over two decades ago, she was told that she would have to cope with her illness for life.
“Nowadays people are still told that. We constantly talk about awareness. Everyone knows what eating disorders are. What we really need is awareness about recovery,” she says. Through their work at the Marino Therapy Centre, Marie and Jacqueline aim to spread this message.
Meanwhile, others are also helping improve the situation. Bodywhys continues to offer support and group therapy, both to carers and those experiencing an eating disorder. In collaboration with University College Cork, EDCC recently completed a study on GPs’ knowledge of eating disorders and the findings will be published later this year.
Inspired by her own family’s experience, Paula has organised for eating disorder expert Gill Todd to come to Ireland in April to hold an updated version of the New Maudsley workshop.
Supported by Bodywhys, if successful, it is hoped that they will adopt and run the course regularly.
“I encourage anyone in the same situation to come along, meet other parents and carers and know that they’re not alone,” says Paula.
(First published in the Irish Independent newspaper: print edition. Also available online at: http://www.independent.ie/life/family/family-features/lending-a-helping-hand-the-path-to-recovery-from-an-eating-disorder-35490752.html)