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.
Mel, thank you so much for this honest view of recovery, and of your family’s journey “taking the scenic route”. It is so very helpful to parents to know of others’ experiences, and that there is no ‘one size fits all’ with respect to eating disorders and recovery. So wonderful to know that your daughter is living such a full, rewarding life now and that you held up the light for her and the notion of a life worth living until she could hold it for herself.
Melanie, Thank you for this terrific article full of hope for those of us who are having to take the ‘scenic route’ to recovery. This story gives me hope. Thank you!
Thank you for telling us your story
We too are on the scenic route
Well done on supporting your d to recovery
We are coming up to 5 years in 😳
I remember thinking we will have it sorted in 6 months, I mean how hard can it be to re-feed your kid
I’m a mum I know how to cook/feed my kids right?
Thanks for sharing your journey, it gives me so much hope!
My D was diagnosed at 14 and at 20 has just lost the 4kg it took a whole year of supervised eating to help her gain!
Surrendering and allowing her to take control with her team and me being no part of it has been emotional and scary.
Watching her become tiny and thin again and hear her say “Carrying weight just doesn’t ‘suit’ me, this is where I’m meant to be”.
I have to allow her to grow and explore this path and learn the lessons herself.
I’ve felt the need to protect her from the moment she was first diagnosed and FBT placed it in my hands to save her.
Now, I hope she can keep developing her true character and ED will shrink as a result.
Thank you for such a positive write-up. I know from experience that recovery is s long hard road and most importantly, we as parents must never give up hope . Everlasting love and ever ready support should be our mantra !
This is absolutely timely for us. My daughter is 15 and has recently been diagnosed with Anorexia. I have felt so hopeless because I just cannot imagine getting from where we are to where we need to be.
My daughter won’t let me be involved in any food prep and my real fear is that ‘insisting’ on taking control would be counter productive.
So hearing your story and knowing that there are other possible routes has helped me more than you can know
Thank you so much for sharing your story. Our d is 24 and stuck. Not recovered but not well. We did not have luck with FBT at the beginning (7 years ago) due to a horrible therapist. I have been trying to find a way to refocus and encourage. My d’s behaviours are identical to the way you describe your daughter. You have inspired me to keep going and to look up motivational interviewing. Is there any specific book or program you can recommend?
I find this website helpful http://thenewmaudsleyapproach.co.uk/index.php/test-page-1/
Warm wishes
D
Thank you for your story . My d is 20. There is no way I can do the feeding for her . I too believe with my love and support she has to find her path through this . She has a therapist and doctor that she likes . It is terrifying to watch but I know she needs to trust my support to get well. Her brother and I are her central places of love and trust. We will continue to provide her safe space and support. She is moving back from college soon- pandemic is too isolating at college. Fortunately academics are her thing so she is continuing to shine in them and will be able to continue as all classes are remote. She is excited to move back and get an apartment with her brother. We all think this is a strong plan. Her father is on board too. Of course, there is no quick fix and I too believe the scenic route is true here. Mental illness is in both families genes –
She wants to get better. She has our full support.
I still am very concerned and in a way dread seeing her and being around the depression of her disease up close . It’s very hard as you all know.
I really wonder if anti-depressants would be helpful- I don’t see that mentioned on this forum.
Thank you everyone . This is my first post!
Our daughter is now 31 and has been battling this since she was 15. She is just about to be hospitalised for the seventh time during that period. This is the first time that she actually sees the need to go in and the first time that she will be able to access post-stay mental care which we have organised locally as there is nothing within a 50km radius.
The sufferer has to want to get better and be prepared to take the necessary steps to achieve that recovery. As carers/parents we need to be supportive but also challenging as sufferers are very good at hiding their illness and making promises, and we need to see through that veil and call them out.
I understand what you are saying, but I think it’s a dangerous assumption to make that a person has to want to get better, and I think that this is a problem in treatment. There are people who recover without motivation to do so. Personally, I believe that there are certain factors that make the motivation to get better more critical, and I think that duration of illness is one of them. So I see where you are coming from. But I think that it’s not a general rule by any means that motivation is necessary for recovery.
Thank you Mel,
I always learn something when I read other mom’s stories. Our D is 14yrs, 13months out of hospital and struggling off and on. Somethings that resonated for me were the need to try and maintain normal social life experiences as much as possible and this idea of “growing out of” hit home because I put a lot of hope in that as she mentally matured, as long as I can keep her brain and body nourished, she will become more and more capable of rational thought!? She just self-harmed last night for the first time in 10 or so months. It’s hard at this age, boys and heartbreaks, thankfully, it’s not as a bad a wound as was in the past but it was a shock to me after all this time.
It’s so hard to see her hurting, restricting, her weight has stayed roughly the same since discharge but these last few months when she’s gone from her meal plan to intuitive eating have been challenging. Thank you for sharing and giving hope.
Thank you for this post. Nearly 3 years since diagnosis, camhs constantly saying I need to be in full control of my daughters food but this has been impossible and led to such aggression that her sisters have witnessed, I managed to find a compromise with her, still weight is dropping slowly, the house is calmer though and allows room for us to talk about her future and start hoping she will get a handle on the illness. Your post gives a lot of hope. Realised this year, there is no answer to this illness, but will care for my daughter with love and persistence no matter what the outcome.