When one of Lynn Crilly's twin daughters was diagnosed with anorexia nervosa, the threat to her child was plain to see. But what Crilly didn't expect during that dark period in 2004 was a condition that would almost tear apart her family and a health system that would struggle to cope with a complex illness, leaving her to seek solutions by herself. Seven years on, after her daughter's recovery, Crilly has become a champion of the forgotten victims of eating disorders, which are estimated to afflict 1.6 million people in Britain. She has become a leading counsellor and has just published her first book, Hope with Eating Disorders, a self-help guide for the parents, carers and friends of sufferers.
"I never imagined I would be in this position but after three years of chasing the system, I decided to treat my daughter myself," Crilly says from her home in Surrey, where she lives with her husband, Kevin, and their daughters, Samantha and Charlotte, 20. "I never dreamed of the lengths I would have to go to get my daughter better – caring for someone with an eating disorder is constant, relentless, challenging and will push all concerned to their limits."
Crilly, 47, says she sympathises with the challenges eating disorders also pose to GPs and the system behind them. Too often, though, she says parents are left feeling isolated and useless – or even to blame. An estimated 10 per cent of sufferers are anorexic and 40 per cent are bulimic, while the remainder suffers from unspecified disorders. The variety of conditions and infinite range in the needs and natures of sufferers means treatment must be co-operative. "No two sufferers are the same and there is no right or wrong way to treat this illness," she says. "But the people around them are the most powerful tool in the recovery process."
Crilly encourages parents to read books by authorities in the field of eating-disorder research and to consult charities and organisations. She has recruited Janet Treasure, a professor of psychiatry and consultant psychiatrist who has specialised in the treatment of eating disorders for more than 30 years, to write a foreword to her book. Treasure emphasises the importance of "curiosity and an open mind and the refusal to accept stigma and secrecy".
Carers should not be afraid to explore other treatments if they are unsure about the course they are on, Crilly says. "Nobody knows your child better than you." Ultimately, she wants to give hope to people in circumstances that can feel hopeless. "Even when the sufferer's a long way into recovery, carers can be left feeling like they need counselling," she says. "But with time, energy, love and patience, an eating disorder should not be a life sentence for anybody."
Here is her advice for families:
Do as much research as you can to try to get a real understanding of the mindset of someone with a disorder and take from that what you think is relevant to you and your situation. Many GPs are fantastic but they have a few minutes to see you and are not specialised. As with all medical conditions, it's important to be careful when doing your own research, particularly online, but there are plenty of charities, organisations and good books. There are links on my website.
Do everything possible to keep channels of communication open between sufferers and their carers and everyone around you, including siblings, who can sometimes feel just as isolated. People need to feel at ease talking about how they're feeling, without being judged. Parents or carers must listen to what the sufferer is saying, however illogical it might sound. Don't be shocked by what you hear. Be prepared for the sufferer to act out of character and say things they don't mean. Encourage them to talk about life away from the disorder, otherwise it will consume everything.
Don't blame yourself
As a parent or carer it's a natural reaction to blame yourself, but don't waste the time and energy, because it's very rarely anybody's fault. Eating disorders usually arise very innocently, often starting with one or two comments that tap into existing insecurities. Treasure's research has revealed that initial causes of eating disorders can include the sufferer's genetic make-up. In the case of anorexia, stress or trauma as early as during birth can play a role. She also identifies personality types often found in sufferers, including an obsession with detail or a strong competitive sense. There are so many causes of eating disorders – you're probably not one of them.
Focus on the mind, not just the food
Eating disorder are illnesses of the mind, not the body. They cannot be cured by treating the physical symptoms alone, or by focusing only on food. It can be tempting to weigh every mouthful and count every calorie, but as long as you've agreed a relatively stable food regime and you know the sufferer is safe (and knows he or she won't gain too much weight in the case of anorexia) then the priority is to get to work on the mind. Once the sufferer is stable, with time, love and positive thinking, the the mind can heal, allowing the body to follow.
Remember the other stuff
Eating disorders can take over everyone's life, but it's important to remember that there is life outside. Interacting with other people and living as normally as possible is paramount. To enable this, the sufferer and carers will need the support of the school and, if you're in work, your employer. Friends are important, too. Do normal things: go to the cinema, play games, sit around watching TV.
Look after yourself
An eating disorder can totally engulf an entire family and tear it apart. Talk to other carers, or find support groups or online forums – anything to feel less isolated. Find time to go out with friends. Taking yourself away from the situation helps you return to it with a clearer, more positive head. Be sure siblings have their time, too. For a relationship to survive, it's important to be united in your approach to treatment as well as life at home.
'Hope With Eating Disorders' by Lynn Crilly (Hay House, £12.99). To order this book for the special price of £11.69, with free P&P, go to inde pendent booksdirect.co.uk.