Families & Carers
It is often said that unless you have been through this experience, you have no idea how distressing it can be living with someone with an eating disorder. The person who was a joy as a child, presents with a mixture of confusing and bewildering behaviours. They vary between being moody, depressed, volatile, angry, demanding, frightened, overly sweet and compliant, butter wouldn’t melt in her mouth, rejecting, withdrawn, alienated, sullen, tortured, self-centred, frustrated, estranged, bargaining, tearful and pleading. Try to remember that underneath all this maddening behaviour is a person who is in real pain who will let it out only in the company of people she trusts. But it can be so difficult to be in the ‘firing line’. Moreover, these illnesses often continue for months if not years, and even the best good-will tends to evaporate over time.
The security of the family is shattered as you try to deal with a life threatening illness, and cope with a person you at times find hard to recognise. Parents and partners can feel overwhelmed, guilty, distressed, depressed, exhausted, exasperated, frustrated and disappointed that they can’t ‘fix’ things. Many blame themselves and can find other friends and family less understanding and supportive than they need. It can help to be in touch with other families who have survived this- and our Family & Friends Groups exist to provide you with encouragement and support.
Tips
Be patient
Recovery can take years. There may be uneven progression. Just when you think the person is better, a dramatic lapse can occur. People with eating disorders can be frightened of recovering and fearful of assuming the responsibilities of ‘well’ people. The hardest times can be when a person looks well and receives much praise, but underneath they may be very uncertain about whether this recovery business is for them, so they may slide backwards.
Don’t expect miracle cures
Learning to live without the eating disorder involves a process of re-learning (and grieving) that can take a very long time. While it is natural to be impatient (and fed-up), constantly switching treatments in order to find ‘the right one’, may play into the hands of the person trying to avoid the hard work of recovery. Of course if you are truly dissatisfied with the treatment you are getting and feel that you have stalled, it may be time to try another treatment. You are always entitled to a second (or third….) opinion. Beware of people who market themselves with a 100% success rate, or who base their work on charisma alone. Check out their qualifications, their experience and be clear about which professional body they are attached to. Different programs work for different people, and the person with the fantastic name or reputation, may just not be right for you and your family.
Understand that the therapist may keep you at arm’s length
It can be frustrating to know someone so well, but to be left in a position where your advice is not sought. Privacy and confidentiality are essential if one is seeking to sift through the messy aspects of one’s life. Children, wives are often protective of the people they love, and will only say what will please you if they think their words are going to be passed on to their worried families. It can help to clarify at the outset just what form of contact will take place between family and therapist. Often an individual therapist will recommend family therapy, sometimes with another therapist. Don’t feel that you are being blamed-everyone in the family will have different views about the problem and the ways to resolve it.
Provide love and support
Young people make mistakes, and sometimes we, as parents, want to protect them from the consequences of their hot-headedness and their naivety. It seems easier to plan her life for her and make the ‘right’ decisions, but sometimes it is best to give her the space to grow- even if she chooses a path contrary to the one you would have chosen. Children can feel very burdened by the responsibility of doing it right for mum and dad. They need to know that you will be there and that they are not a great disappointment to you.
Set rules and boundaries
It is so important that you consistently show your child that they are special; but not because they are ill. It is too easy to cater for every whim of your child or to make every allowance possible because they have an eating disorder. But she needs to understand that her illness cannot overwhelm the family and dictate all their patterns. Sure, there will be adjustments- time out to visit doctors, curtailment of sport, the heater turned up a bit; these things can be negotiated. But she must not be allowed to tyrannize every other member of the family and insist that her way of doing things must set the standard for all. It is always a juggling act; sometimes she will need a sympathetic ear and a sensitive response; at other times she will just be trying to bargain with you to advance her illness.
Learn effective communication
As much as your child may want you to only discuss how fat she is, or how awful your cooking is, or how terrible it is to eat meat, or how you couldn’t possibly understand, it is crucial that you don’t conspire with this and centre every topic of conversation around food and weight. Talk about other things as well. When you are distressed by her behaviour, try not to criticize her as a person, but indicate which of her behaviours are not acceptable. She already has such negative views about herself, and hearing you attack her will just reinforce how pathetic she is. She is looking for some way out; and if all she does is such a problem, a nuisance, a torment and brings about the destruction of the family, then why should she try to get better?
Maintain a focus on the other members of the family
It can become too easy to lose sight of the needs of the other children who seem to be coping so much better than the sick member of the household. You are after all so busy, driving her to myriad appointments, shopping for food she will only eat, contacting school about homework, and trying to keep her interested in things beyond the darkened bedroom and the melancholy music (or the bumps and grinds of repetitive sit- ups in the bedroom!) However the siblings (and the partner) can sometimes feel invisible, and that they don’t count any more. Take time out with them, even if your daughter seems to have more urgent and pressing needs. After all, you wouldn’t want another child to think they too have to develop an eating disorder in order to be noticed!
Look after yourself
In our grief and our desperation about what has happened, we can forget to look after ourselves. It is so important to take some time out and remember that you are many things as well as being a mother. You like music, and concerts, house decorating, car maintenance, chocolate, skydiving, browsing through magazines, walking along sandy beaches, taking the dog for a walk, completing uni studies, leading the Brownie pack, learning how to use the internet, reading bedtime stories to the little ones, working in the school canteen, attending yoga……unless you do some of these things, you may not be strong enough to endure the troubles ahead.
Download Family & Friends Pamphlet (~216kb)
Download Involuntary Treatment Pamphlet (~188kb)
Download Pamphlet on Public Treatment in NSW (~251kb)
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