I wanted to share this lovely post from one of my readers. As a mom with two children struggling with an eating disorder she gives some great advice, hope and strength to those of use following a similar path. The reality of living with an eating disorder in the house is different for everyone. It is tough, frightening, painful and like living in some private, hellish parallel universe. What is also frightening is how strong a link there is from eating disorders developing and fathers who are absent, abusive and neglectful.
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Hello everyone,
A swift update. My son Jordan [who likes to be called just J] ended up being sectioned and spending nearly two and a half months in the Huntercombe hospital, Stafford, UK. It was a nightmare trying to get him in the ambulance to take him on the 3 hour journey – his resistance and strength was superhuman – quite surprising for someone so weak with starvation. The dents in my freezer where he punched it is testament. I’d even struggled to disarm him when he’d grabbed a couple of bread knives and tried to stab the social workers. Once inside the hospital, he protested violently, kicked the furniture and finally fell to his knees, sobbing and breaking down totally. It was heartbreaking, but necessary. I was relived that he was finally where he needed to be. He was admitted weighing 8 1/2 stone after losing around 1/3 of his body weight. After admission his blood pressure dropped dangerously low. Thankfully the hospital staff saved his life and put him on the road to recovery. He hated it there, but was determined to do whatever it took to get himself out and he quickly and steadily gained weight. He was discharged weighing 10 stone, which is still very low for his height, but he is terrified of getting any heavier.
He is still firmly in the grip of anorexia and doesn’t really want to recover [although he tries to convince us that he has recovered.] Just like Sophie, for the first month he seemed to be doing well; he was perky and chatty, controlling his own food intake and maintaining his discharge weight. However he is now slowly losing weight again, even though he eats somewhere between 1700 and 2000 cals per day. He goes through periods of food obsession. At first he would only eat a variety of just a handful of ‘healthy’ foods; that changed and his calorie intake came largely from ‘healthy’ fluids, including lots of milk; now he’s gone to the extreme of eating mainly unhealthy food and drink, such as energy drinks, kitkats, fish and chips from the chippy and black coffee. He sees the CAMHS team regularly, but under duress. He refuses to co-operate and will only agree to being weighed and having a very brief consultation. He began haphazardly taking his anti depressants, just before stopping them completely, insisting he doesn’t need them. He refuses to see the medics and have tests re his curved spine and sleep paralysis, saying that he can’t stand being touched during examinations. Despite all of this, the old happy ‘normal’ J that we used to know – the one that used to joke around and the one who you could have an intelligent conversation with – does still exist and emerges fairly frequently. He is very changeable though, one minute he’s laughing and feeling optimistic about the future and making plans/setting goals and the next he’s angry and depressed and saying he didn’t ask to be born. He is frequently argumentative, aggressive, verbally abusive, selfish … it’s as if he’s possessed by the devil. I’ve learnt to keep my composure and walk away from him when he’s being nasty, telling him I refuse to talk to that other voice/creature. After a short time he will calm down and be nice and reasonable again and all the harsh words will have been forgotten. He never apologises though and has a complete lack of empathy for anyone else. The good thing is, he is truthful and admits his dieting had got out of hand, that it was all about control, that he does hear the ‘anorexic voice’ [saying, for example, that he used to grab a handful of cereal, put it in his mouth, but was then compelled to spit it out], that we had all been right, but that he had refused to listen, believing that we were all lying to him… He says he forces himself to ignore the Ana voice as he has no intention of ever getting sectioned again. He jokes that he’ll be visiting his younger sister Melissa in hospital when she gets sectioned. He tells me to stop worrying and that although he hates food, he knows he has to eat. He is aware that there is a strong chance of relapse and says he’s not going to let that happen. How can any parent not worry? Due to being malnourished for so long he now has low bone density and a curved spine and he has weakened his heart. He also has very poor short-term memory and constantly repeats himself. The hope is that he will settle at college next year, build up his confidence and find some happiness [he did try a college course this September but it was all too soon - all the anxieties and doubts flooded back and overwhelmed him and he had to drop out]. Thankfully he has a lovely supportive friend.
Melissa [now 15] is sliding down the same slope as J. After battling with her E.D and, for months being able to maintain her weight of around 8 1/2 stone [which is very low for her height of 5ft 8"], she is now losing weight again and struggles to tip the scales at 8 stone, fully clothed. She used to be a healthy 10 stone and a perfect size 10, but thought she was fat. She is very rigid in the handful of different foods that she allows herself and in her calorie intake, which is now only a few hundred per day. She still thinks she’s fat even though she is very thin. Thankfully she has a lovely CAMHS counsellor, who sees her weekly and her teachers/mentors at Bryn Elian school in North Wales are bending over backwards to support her – she is allowed to leave early and go in late on some days, has been able to drop unnecessary subjects and is allowed to learn maths at home. So the reduced school stress has resulted in an improvement in her confidence and mood. She is motivated to complete year 11 and pass her GCSEs and go to college next year. Hopefully she can stay healthy enough. Frequently though she gets so depressed, tearful, argumentative, nasty and even violent. Her eyes glare and something ugly speaks. It really isn’t her as the real Melly is gentle, loving, caring, helpful, beautiful and a joy to have around. Ana-Melissa sometimes threatens to self-harm. We have spent endless hours just talking and cuddling and crying together. [She's so different to J who doesn't do hugs]. Despite the fact she has many lovely supportive friends and lots of male admirers, she struggles to be happy. She feels constantly cold and her hair is falling out.
Their older brother and sister Andy and Shelly seem to have given up and feel that Mel is just an attention seeking difficult teen. It is difficult trying to convince them that neither J or M want to be this way, that they cannot help it, nor can they fight it alone. At least Mel had the strength to ask her school teachers and everyone else for help. I try to stay calm and understanding and supportive and positive thinking, however I’m not supermum and I sometimes can’t help raging and effing and blinding back at them. And yes, I’ve told them both to just grow up. I do get over my angry outbursts and frustration quickly though and both J & M know that I’m just releasing tension and that I’ll always be there for them, will always love them and will do whatever it takes to help them both back to health and happiness. My GP and the CAMHS team have told me to expect to be the punching bag and that this will be an up/down struggle for years, maybe a lifetime. There was only one time when I totally lost control, and that was when after the millionth time of going round and round in circles with Melissa I finally blew my top and yelled that I couldn’t take it any more. She had been my rock during our worst times with J and now she was sapping all my energy. Rather than hurt her or smash up the house as I so deeply desired at that moment, I stomped my way upstairs to my room, sat on my bed, gripped the quilt and, from the pit of my stomach, just screamed and sobbed and rocked backwards and forwards, yelling “why, why why”. This went on for a good 10 minutes until I had burst blood vessels in my face and I had nothing left inside of me. Shelly came up with a cup of sweet tea, spoke soothing words to me, told me everything’s going to be ok and helped me pull myself together. Meanwhile Melly ran outside and we found her sitting and just staring into space. Anorexia is an ugly powerful destructive demon. Daily I pray that J & M find the strength to overcome it.
If I could offer any parent advice I would say get your GP [pressure him/her if need be] to refer your child into the psychiatric services as soon as you know he/she is showing signs of a worrying eating pattern, and once there, if things don’t improve, push for admittance into an inpatient eating disorder unit/hospital. Remember, our kids will not/cannot just ‘snap out of it’. I was so angry with the old GP [we're with a much more sympathetic and helpful one now] because he just dismissed us, saying nothing could be done unless J wanted help. He had a mocking, couldn’t-care-less attitude and told me I had no choice but to just wait until J got so ill that he’d be rushed into hospital, but by then it might be too late. I just sat there, stared at him with a look of shock horror and told him he has to get us some help. I didn’t move from my seat and just kept repeating that he has to help us. Eventually he said he would have a word with his colleagues at the local hospital and see what could be done. A few days later he phoned me to say that he had put a referral through to the Child and Adolescent services, but warned me that the waiting list was long and that we could be waiting weeks. Thankfully it only took 2 weeks.
My love and prayers go out to all who struggle with an eating disorder and all the families involved. It really is tough on everyone with all the stress and worry and constant walking on egg shells, not to mention the endless meetings with all sorts of professionals – psychiatric nurses, psychiatrists, doctors, family therapists, dieticians, school teachers/mentors/educational welfare officers… all this on top of having to earn a living.
Sorry I’ve gone on a bit! It helps to get the thoughts down. Mel also finds it therapeutic to diarise stuff that has happened in her life in relation to her father and what led to her eating disorder. She says that when she is older she will publish it on my website http://www.sharonkilby.co.uk/site/ The site exposes corruption in North Wales and the people responsible for forcing my children to live with their abusive father almost half their lives.
I have been shocked to learn that eating disorders are not so uncommon anymore. It seems that everyone knows someone who is suffering with one. Melissa knows 4 people in her school year who are sufferers. My boss knows 2 people who are anorexic, a friend of mine knows 2 anorexics [one of them fully recovered and went on to be happily married with child, the other person didn't recover], my solicitor has an anorexic in her family… My God what is happening to our youngsters? Maybe EDs are symptomatic of the sick insane, evil society that we are forced to live in [more on that in my site.]