by Melanie Stevenson, F.E.A.S.T. Parent Volunteer
Thankfully my daughter is fully recovered, and the icing on the cake of that recovery is that, in spite of being without periods for four years, she is now the proud and adoring mother of a one-year old. It certainly doesn’t get much better than that.
How did we get there? As scary as it may be to those who are just starting out, it took us eleven years to get there. For those parents who can get ‘control’ of eating and weight gain, your journey will be shorter. My daughter had been a ‘picky eater’ from being little and her descent into anorexia nervosa was rapid. She was diagnosed at the age of 15 and was in hospital within a couple of months of that diagnosis. When she came out of the hospital, I still did not understand the illness. She started eating less and losing weight as soon as she left, particularly as she had a bout of gastroenteritis which quickly left her wanting to restrict again.
During the second hospitalisation I found FEAST – and the science and knowledge which helped me understand what I was dealing with. It was clear that we were not using FBT – this was only introduced in the UK around eight years after her diagnosis. I took her out of the hospital early, (much to the huge disgust of both her local psychiatrist and the hospital staff) to refeed her at home myself. We did great guns until a holiday with my partner and his daughter (premature in terms of her recovery, as I realise now) allowed the illness to take over and my ‘control’ of her eating was lost. Without the backing of her team it was destined never to return, as I could not get her to eat when she was little, so getting the ‘upper hand’ with her illness seemed impossible. I know this is not what should have happened – but I also knew that my circumstances as a single parent and with a child who had never shown interest in food seemed insurmountable at the time and I had to take stock of my situation.
So, I turned to an approach that I had used in the past in other circumstances – and that was a ‘solution-oriented’ one. Where was I at now, and how did I create those ten steps to the ‘perfect’ life? (Perfect in the sense of having the life that you want – which HAD to include my daughter’s recovery, for both her and me).
These were the positives:
- She never wanted to return to hospital
- She now understood the importance of a three meal and three snack structure which she had to adhere to if she was to stay ‘safe’ and out of hospital
- She had started to show interest in a career as a children’s nurse and that was a big motivator
- She had been in hospital twice, so there was no way that she could or wanted to be in denial of her illness
- She would accept my nagging about making changes to her meal plan, even if she could not implement them
- We had a good relationship and our love of our pets and animals was the ground where we found affection and laughter
- She was at a low weight but she was able to retain it which meant that she was not zooming right back down to ‘ground zero’, as I called it, of needing hospitalisation
These were the negatives:
- She would not allow me to be involved in the preparation of food in any way
- She would put a middle finger up at me whenever I told her she needed more fats or proteins
- She was secretive about the illness apart from with her closest friends
- Her weight was low and her periods had stopped
It was clear that she would not recover without weight gain and I understood that, but at the age of 16/17, we were in a place of limbo where there was no way that I could make it happen. So I had to focus on what I could make happen – and that was supporting her in her education, supporting her as best as I could with her illness, and encouraging her to think about the future and the ‘life worth living’.
In the book by Lock and Le Grange ‘Help Your Teenager Beat An Eating Disorder’ there are two aspects to FBT. Restoring weight is clearly the most important, but equally they place importance on helping the child keep on his/her projected life path without the need for long hospitalisations which disrupt that process. Continuing with a normal life is as equal a part of the therapy as weight gain alone. FBT does not work in all cases but this is one of its strengths. And I regularly state on the ATDT Forum that recovery is difficult without a ‘life worth living’ being helped to take shape which will eventually kick the illness out of the patient’s life.
I don’t believe that recovery in itself is ever valued, in the early stages in particular. And this is where parents can play a strong role – encouraging those dreams and helping their child to see what life could be like without the restrictions, the purging, and the anxiety instead of enjoyment around eating. Only parents know what interests and motivates their child, to help them want to move away from the illness. And it is possible to focus on that aspect, even if you are failing or faltering with weight gain, or totally preventing restricting, purging and exercise behaviours.
My daughter achieved her nursing qualification – but needed another hospitalisation in the meantime. She let go of the illness when she was around 25 – she was so tired of watching her friends eat normally and be relaxed around food that she just let go and allowed herself to put on weight. She then could not cope with the extra weight and restricted severely again and went right back down the way. I raged with her and told her that now she was ‘choosing’ to be ill, berated her for throwing her recovery away and felt like despairing. But after I had calmed down, I turned to another approach which is worth using – motivational interviewing. I told her that, at least now she knew what it felt like to carry more weight and this time she would be prepared for it and could work on tolerating those feelings. She agreed that this was true and let herself start to put on weight gain. A new boyfriend was instrumental in supporting her and encouraging her to try meat again, and eventually she gave up the vegetarianism as well. She is still reluctant to eat red meat, but she felt that her brain needed animal protein in some way and allowed herself to eat it again because she wanted recovery.
When I look back now, I fully believe that, unless you are one of the few lucky families who catch the illness before weight loss is too drastic and who get excellent clinical support to help you fight the illness, then it can help to view moving out of the illness along with the parallel move from childhood/adolescence into adulthood. Another parent used the phrase ‘taking the scenic route’ of recovery – no one ever wants this route. We want the motorway that will turn our child back into ‘normal’ and to who and what they were before the illness.
If I am really honest, and as scary as it may be, I think now that in many ways eating disorders have to be ‘grown out of’. When the brain is arrested and changed by these illnesses, life has moved in a different direction and our child has moved in a different direction too. If my daughter had been well, the other career she was interested in was being a vet (I never encouraged her down this route because in fact, she didn’t really like schoolwork or studying!) but she recognised that she didn’t have the energy to take all the qualifications and achieve the grades required at that time in her life. She has no regrets about it because she loves paediatric oncology nursing. Would she have had that passion and compassion for nursing without the experience of being a patient for so long that was caused by her illness? I don’t know, is the answer.
Neither of us has ‘the perfect life’ – she still suffers periodically from depression – but we have lives we love which are full, useful and interesting. And neither of us asks for more.