By Angie Williamson, UK
Why? Why was the only question going through my mind. I was lying on a very uncomfortable single fold out bed on a children’s ward, at about 2am. We had been admitted with some significant heart issues earlier that day, 4 days before Christmas 2021. The heart machine was beeping non-stop and all I could think was I wanted to get off this ride, I didn’t much like it right now.
My daughter, age 14, unbeknown to me had developed a significant eating disorder. One day just before her 14th birthday I saw her in just a dressing gown and just thought to myself ‘oh s**t, we’ve got a problem’. She was painfully thin. We confronted her calmly and kindly and she never denied it; in fact she offered the information. We at the time thought, naively, counselling would sort the issue. We had no idea how this disease actually takes over their minds and how actually their cognitive function is incredibly impaired. She started counselling; I would drop her off and sit outside in my car and cry. After we had made the decision to bring this problem out to the open, she seem to deteriorate fast. No amount of rational thinking was sinking in and the eating was becoming less and less, and harder and harder. I would catch her throwing food into the neighbour’s garden.
We took her to the GP and he referred her on to the relevant service. This took time and whilst we were waiting it felt like she was shrinking before our eyes. Her body, her mind, her personality, her happiness. She was just like a ghost, a body with no soul. She was grey and empty inside with no thirst for fun or life. The threat of hospital or even death seemed to spur her on, we had played our trump card and lost. Within the month of us going to the GP and the hospital admission her weight had gone down to a very dangerous level. I was nearly physically sick when we heard that number.
Hospital admission was now 4 months ago and we’re able to complete Family Based Treatment (FBT) at home. It has been difficult, realising that your child will lie, hide things, do anything it takes to allow the anorexia to stay in control. It’s also hard to understand that no amount of therapy will work until they gain weight, which almost seems backwards and as a parent with no knowledge of this disease is very frustrating.
The things I have learnt are to stay focused, at all times. Never take your eye off the ball. You cannot trust the anorexia; not your child but the anorexia. It controls them.
The guilt they feel is all consuming. They feel guilty about everything, eating, not eating, stopping everyone’s lives. Remind them, they are not to blame. They are poorly this is not their fault.
Eating is just not negotiable. And trust is essential. I found that I had to re-earn my daughters trust in that I am better than the disorder in knowing what is best for her. I never tried to lie to her about what she was eating, and assured her that I know exactly what I’m doing and what she needs. This put me in control; more in control than the disorder. And once you’re in control, there is no negotiation on what you say. I say eat, and we sit there until it is all gone.
Not everyone is the same, and no two people will react the same to treatment. GP’s and doctors give great advice but it is generic. It is designed for the masses. We were always taught to take the bits that work for us, and mould it to how it works for our daughter and our family. Some people react better to ‘just get on with it’ attitude and others need a softer approach. Our daughter had fear foods and we slowly reintroduced them, I know others who do not allow fear foods to be rejected ever. It really is trial and error and seeing what works.
The main thing I’ve realised is to get that thirst for life back, they have to live it. It’s ok to keep them motivated by giving them things to look forward to but I can honestly say since we have gained enough weight to venture out things have improved dramatically. That feeling, that gut feeling of enjoying company and having fun is the driving force. They cannot remember what life felt like, they aren’t capable because of the lack of nutrients they have suffered for so long. To trigger those feelings, get them out, they need to feel it. In a wheelchair if needed, and eventually you will see them start to return to you bit by bit. Over time, small smiles will return. Cherish those moments as they are few and far between at first. But as the restoration takes effect, the person they were starts to return and it gives you hope that just maybe, you will beat the devil that has taken over them for so long.
No one else will understand it, friends, family, no one. People don’t understand this is a mental health disorder, not a physical one. People see them eating and assume they’re better. Learn to live with their miseducation and not to dwell on their opinions.
Everything you describe is bang on similar to our experience. Seeing the complete loss of personality in our child will haunt us forever. The re-emergence of that personality, the smiles, the laughter, the ‘zest for life’ will forever be our best gift. I could have written this myself. Thank you for sharing and reminding us that we are not alone in what we experienced. That this disease is awful but beatable with consistency, strength, hope, and unwavering love and determination.
Thank you for sharing! Couldn’t have said it better myself.
You have brought a tear to my eye. This piece really resonates with me. This illness is cruel and takes away our wonderful children. They disappear mentally as much as physically and you are right in that others really don’t understand that. We must keep sharing our stories, helping each other and growing our knowledge. Good luck with your daughters continued recovery.
I needed to read this today.
Thanks for sharing.
AN took so much away from the life of our beautiful 19 year old, it is a Cruel disease.
Hope keeps you going
With consistency, love and hope we are slowly seeing our daughters life return.
Sending HOPE to all families
Thank you for sharing, it totally describes what this illness is all about and how it affects our beautiful lost children both in mind and body. It just shows that with help , love , and the right support our loved ones can return to the happy life they truly deserve. Thank you x
This is exactly the life we live that no one but a caretaker can understand. Thank you so much for writing it!
Exactly my experience Angie. Food is medicine. Medication was the real game-changer for us though. I resisted it (why? my stigma, my judgement). Medication took the compulsive edge off the exercise and allowed her to relax more and just be. She is almost weight restored and her brain has definitely changed – she is back with us, living life and happy. Recovery is possible but, food is the number one medicine. They must eat and eat 6 times a day for many, many months. The times I had got busy and let a meal slip – she has descended rapidly. Thank you FEAST and Good luck everyone.
Thank you all! I’ve only just re looked at this, brings back some nasty memories!
I’m glad it has helped just a single Person would have been enough for me x