We’ve added some of our life stories to this section, Eating Disorders are so unique to each sufferer. We have changed the names to protect their identities.
Dying To Be In Control
My daughter has battled with anorexia nervosa for over 8 years now – but it isn’t just her fight our whole family are battling this horrible illness. Our story hasn’t a happy ending yet but we are getting there.
My name is Jean and I thought I would share the story of my daughters Eating Disorder with you.
Chris was 17 when all this started – a beautiful, intelligent, sporty, popular girl studying for her A-levels. We were a close family and I prided myself on making sure we all sat down each evening to a good family meal – it was the backbone of our day and Chris always ate up.
Gradually I started to notice her getting thin and drawn, she denied anything was wrong. I lost count of the times I dragged her to the GP and the endless tests to see what was wrong. When they all came back negative, I was beside myself and one night decided to phone my daughter’s friends to see if they knew anything. Racked with guilt at going behind her back I dialled one of her friend’s numbers. “Hello” said her friend, then it all came out, all her friends were worried about her too. She hadn’t been eating anything during the day for months! It confirmed my worst nightmare – Chris had an eating disorder. For months now she’d been existing on that one meal a day with us – not nearly enough and doing extreme exercising. When I confronted Chris she’d only admit she was a “bit bony”.
But at last we finally had a diagnosis and Chris was referred to the local mental health unit. By now she was 6 stone 4 so was admitted to hospital. Chris seemed to be beyond help and after numerous hospital admissions she was referred to an eating disorder unit in London. It was heart breaking to have to leave her at her most vulnerable. She was there a year and while it was devastating for us it paid off because with their one to one work Chris’s weight went up and she came home. Unfortunately though, without their support, she slipped back again. Chris has had more admissions in Blue Stone Unit and is currently attending weekly counselling sessions. After each admission we see a slight improvement in Chris and her way of thinking, we live in hope, not of a full recovery but that she can at least learn to live with her illness and learn to control it NOT the other way round. We still worry about Chris, her life is on hold. She’s had to abandon her dream of being a PE Teacher and can’t play the sport she loved . We don’t know what caused this illness, Chris says it’s not so much about wanting to be slim but more about control. When other areas of her life were stressful at least she could control her food intake.
People have said to me “Well I’d just make her eat,” but she is an adult She is entitled to freedom and independence so we just have to love her and be there for her. You can feel very isolated when your family is going through something like this, especially as our daughter has such a hard time even admitting there is a problem. At FEDS , though, it’s a great relief to be able to talk to other parents who know exactly what you’re feeling and can give you support and hope for the future. We help each other. My husband and I look forward to the monthly meetings we don’t feel so alone any more.
how long being “in recovery” takes……
Hello, I am S and am the mother of a 17 yo daughter, B, who has been battling anorexia for 18 months now. Her ED (eating disorder) Team tell me B is “in recovery” –how long being “in recovery” takes, I don’t know. This is our story, so far.
B had been a picky eater for as long as I can remember. Even at an early age mealtime had the potential to become a battle, one which I tried not to engage in and (with hindsight) I feel that, in order to make things easier and calmer, I “gave in” and didn’t enforce variety to B’s eating – I was content as long as she was eating, but gradually – so gradually I did not register what was happening – B’s acceptable range of foods became less and her portion size became smaller, until it was “normal” for B.
In January 2009 I discovered B was self harming by cutting. Shock, dismay, fear were my immediate reactions but I was able to hug B, tell her I loved her and reassure that I would get her the support she needed and so we started with our GP, who referred B to the local CAMHS unit and in April 2009 B started weekly sessions with M, a clinical psychologist.
May 2009 one afternoon I was ironing when I heard B vomiting in the bathroom above me. AND IT HIT ME!!! B was making herself sick. I was terrified but was able to confront B who denied making herself sick, said she had been feeling “off” all day. I wanted to believe her, to believe every word she said, BUT I KNEW. I just didn’t how what to do with this knowledge. I watched B for the next week, trying to catch her out and was very relieved when we received a phone call from M saying that B was being referred to the Eating Disorder Service. I went straight to B, hugged her, told her I loved her and reassured her that everything would be ok – in reality I was so scared I would lose my beautiful daughter.
June 2009 B, husband and I met with the Sharon and Annette, the ED Team and it was confirmed that B had anorexia and was over exercising. B weighed approx 77lbs, her BMI was 15.7. It was agreed that B would not become inpatient immediately but could remain outpatient as long as weight was increased. I don’t remember much about this first meeting – I think I was in a daze, trying to keep up with all that was coming at me – But I do remember, B was sitting, not looking at anyone, and Annette said “B only you can fight ed, but you can’t do it on your own”. I thought Annette meant, “B you have to do this yourself but ‘we’ (the ED team) will help you fight” – I didn’t understand at that time what my role in the fight against ed would be. Nor did I appreciate how long it would take – I honestly thought B would be well within 6 months.
July – Sept 2009 – These months were spent in a flurry of activity, I was forever in and out of work – my role was that of chauffeur driving B to 3-4 appointments per week – ED Team; Dietician; M; GP for bloods & ECG; Family Therapy sessions attended by B and son C (student at home for hols). B was slowly gaining weight, C was overseeing her meals which consisted of breakfast, a sandwich for lunch and small dinner in evening. B did not want me involved in her meals, she did not want my help. I was the bad cop anyway as I had removed the Wii Fit from use (on instruction of ED Team) and had thereby curtailed some of B’s exercise routine.
Oct 2009 C went back to university and I tried to take over where he left off. I set out breakfast which (I now know) B did not always eat. B would swirl a little with milk around the dish and leave the remains in the sink for me to find. Lunch at school – well I wondered if lunch was really happening and dinner time was “difficult” to say the least. B was going backwards, I could see it. The weight she had gained was being lost again. I felt increasing helpless, frightened/unsure of how to act with her, the slightest upset fired up fierce tantrums. I didn’t know what to do to help. With the number of weekly appointments I was finding myself increasingly away from work and I was trying to not let my work colleagues down but I needed to be there for B, I couldn’t let her down. It was hard being there for everyone.
Husband and I were invited to family therapy – B was there also. For the first time I heard ed being separated from B and I finally understood. The tantrums, the behaviour was not B, it was ed fighting. B was still there but hidden behind ed who was controlling the situation. B was not in control. Ed was in control. That insight has and continues to support me, through all the darkest hours, my daughter is there and she is not ed.
Nov 2009 B’s weight continued to fall and the Team mentioned introducing B to the staff of Bluestone – inpatient was looming – well that statement chilled me to the bone. I knew that B may become inpatient at some time but I also knew that I was not ready to let her become inpatient and I realised that it was time for me to take off work, time for me to take on ed. I remember the meeting clearly when I told Annette, Sharon, Claire & Ursula (Family Therapists) of my decision, I was worried they would think I was interfering/overreacting but was overwhelmed at their reaction – I left that meeting feeling, for the first time, that not only were they there to support B but also to support me. Work was very understanding; I was offered 6 months sick leave fully paid.
The next few weeks were spent trying to close loopholes – cutting back B’s opportunities for activity at school etc, removing her from PE classes, driving her to and from school, becoming aware of excessive movement at home –all unnecessary activity was stopped. I was reading books, surfing the internet, all in an attempt to understand what I was dealing with. I was invited into B’s meetings with the ED team and with their help was fast tracking but B’s weight was still falling, inpatient was still looming and I was frantically trying to get a grasp of how to battle ed. I chanced upon a website FEAST – Around the Dinner Table Forum *ATDT* – here were parents/carers of ed sufferers who were all battling ed and they were championing the use of “magic plate” – the parent/carer provided the meals/food and all had to be eaten – no negotiation. I struggled with the concept but with fear haunting me, ed before me and hospital looming, I realised it was all or nothing. I had everything to gain if it worked for B. So Xmas week arrived and along with it came magic plate.
So our daily routine began – breakfast – I set breakfast out and called B to table. I sat with her while she ate all. We then sat together for an hour watching TV, talking, reading, etc so as to ensure B did not visit the bathroom to “throw up”. Sounds easy written down, but it wasn’t, yet it wasn’t as hard as I had imagined it would be. Then lunch time came and I made dinner – again same routine. Tea was same and supper was also introduced. I bought the most appealing food I could think of (our food bills were horrendous), I carefully read every calorific value of each brand and chose the highest content deliberately – I reckoned that if I could provide one yoghurt at 270 calories that it would be easier for B to stomach than 2 x 120 calorie yoghurts, so I chose low quantity/high calorific content foods first for easier refeeding. I made my own milkshakes – 1 sachet strawberry buildup mixed with good quality icecream and double cream with a little milk (500/600 calories each) and presented them to B. Oh we had words over same, but B did drink them – I think she saw my determination and in that first week of full refeeding B had gained over 4lbs – I don’t know who was the most surprised, the Team or me – well I was secretly very pleased too – I now knew I could do it. I could refeed my daughter.
And this is how we continued, now it wasn’t easy at times, there were tantrums. It was exhausting being solely responsible for refeeding B – husband did try but he would tend to “fly off the handle” too quickly or forget to feed part of the meal, leave her alone after meals, etc – well it was easier for me to just keep going. And the rewards, more and more frequently I saw B again, the B I knew so well would reveal bits of herself to me. I got spontaneous hugs, kisses, humour – these moments were so precious to me, they still are, they continue to bring tears to my eyes when I recall these times of “rebirth”.
Now I didn’t manage all this on my own, I sought support from everyone who could help me. Daily I logged onto the ATDT forum posting concerns and gaining support and advice from other carer’s responses. Once a week I would drop into work and offload to my work colleagues – the best advice I received from them was “break the day into hours and tackle each hour at a time”. I was attending personal therapy fortnightly and greatly relied on these sessions as times when I could break down safely – Oh I dumped so much onto my counsellor during the very difficult months. I also looked forward to talking to Sharon and Annette and Claire and Ursula, no matter how apprehensive I felt prior to each meeting afterwards I felt so much more secure in myself.
In January 2010 I started attending F.E.D.S. in Newry and quickly found these meetings another source of support. Here I learnt the reality of eating disorders, how inpatient treatment was not (as I imagined) a 2-3 week stay, but would possibly last 3-4 months minimum. I knew I had made the right decision re work. In the midst of other parents/carers I could ask any questions knowing the answers would be truthful and graphic. I needed to know exactly what I was dealing with so that I could continue to fight “tooth and nail” for B’s recovery. I really looked forward to these monthly meets as my time, a place for me where I could go and be totally understood.
February 2010 and B was progressing slowly, snacks were being introduced to her mealplan. However, I was struggling. Being in the trenches fighting ed 24/7 was taking its toll on me. I wasn’t sleeping, was finding it hard to concentrate, generally feeling low and heavy hearted, my energies were draining and GP prescribed anti-depressants and sleeping tablets. With this medication, counselling and all the aforementioned support combined I gradually regained my ability to cope. But through it all I focused entirely on B and her needs. My needs just got left behind for a short while.
March – April 2010 and B continued to improve. We were at 3 meals and 3 snacks daily. Family Therapy ceased and B’s appointments eased to fortnightly. I think we were all beginning to breathe again. In May 2010 I returned to work, with reduced hours. That was a big step for me, it was difficult to slacken the tight reins I had been holding B under. I had to learn to trust B again and that was frightening. Going back to work also meant that B had to walk home from school and that concerned me greatly.
June – Nov 2010 – progress continued. B sat her GCSEs achieving excellent results.
B is “in recovery”, I am still vigilant, maybe too much so, but I’m not ready yet to “let go” of the reins. I still provide magic plate, still set out breakfast in the morning for B, but do not hover around whilst same is being eaten. Meals are more relaxed but I am still watching, fearful…. B gets her own snacks now. B went to Rome in October with the school – 5 days away – and I fretted the whole time, when B returned I thought there was some restriction, her behaviour was uneasy, so I just fed and fed her. In November B had her school formal and the sight of her in her gown is another treasured, precious moment for me. She looked stunning, healthy, beautiful, well ………
So here we are, December 2010, 18 months on in our battle with ed and B continues “in recovery”. Appointments are now stretching to 4-5 weeks. I am trying to relax a little but its hard. Fighting ed has left battle scars which may, in time, fade but at the moment they are still raw. I wonder if life will ever be the same again and then I think – no life will never be the same, my daughter has changed and so have I – we are searching for a new normality to live within. I can never forget about ed, I may not think about it 24/7 now but I am always aware of its existence and I will stay alert. My daughter is alive and regaining her health……. And I will fight for that always……..
With support ed can be beaten and will be beaten by my daughter and me…..