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Member 37 posts
Posted 3 years ago
Oh my goodness I am reading your posts with a mixture of awe and dread because the things you have/are going through and you can still stand up, function, and offer support to others is beyond me. I am at the beginning and I have this huge pain inside me that's made up of fear, panic, guilt and not understanding what the hell happened to cause this. I am questioning every decision I have made in the last 5 years and analysing if this or that was what caused this to happen. I am reading everything on these pages and taking it all in and I am so glad I found this organisation because I feel so alone and frightened.
Admin 220 posts
Hello, please do see that there is a way forward and you will see your daughter through this. I do remember someone saying something to me at the beginning of my daughters illness about timescales and I thought no way, we will be done with this in months. I understand now that there is a process and the illness seems to have stages that it needs to go through. Just remember how ever drastic the situation and however alien your daughter and her behaviours might be your daughter is still in there battling from the other side. The other thing that I must get you to understand that there is NO BLAME, this illness is not of your doing, it is a coping strategy that your daughter had developed in order to cope with the stresses that are frightening her in her life. You are her support and her way out of the confusion and rigidity, so please value yourself and see how important you will be in supporting her as she recovers. I am also so glad that EDA is here for you.
Member 2 posts
We are 6 months into the illness but she has been not well for about 4 years on and off and I hope I am not speaking out of turn but I don't think I could come through 6 years of this how did you cope did you personally have help or did you just get on with it. I'm so pleased that you and your daughter got through it but I not coping and really really struggling to stay strong for my daughter
I so understand what you say, I can remember a few months in someone telling me that it would last about 3 years, I thought absolutely no way I couldn't cope. But I suppose that I didn't really have a choice, there were many times when I was frightened for her life and I could not see a future it just seemed a dark tunnel however I was very determined that we would get through it and I diid. I was quite pragmatic, completely putting myself on hold, it blew a hole in family life, I lost work, but I was determined.
I was also pretty rubbish at being around her in the early day as she has always known exactly which buttons to press on me to wind me up or even to get what she wanted from me. When in those early days we were trying to plan meals, she would always test me when it was meal times she would test me always pushing. seeing how far she could go. But all of this was because she was so ill and so desperate and I realise now that as horrible as she was being to me she was much harsher to herself. I would do it differently with hindsight - I would try to do more planning of meals and activities so that there were no surprises.
The long and the short; initially she went into a not so strict unit, the next year she went into a brilliant unit where they were clear, straight forward, no mess and that is why she recovered. I was so in the dark, I was so frightened and I made mistakes, that has been a motivation in my work for EDA as the key thing is to learn about the illness, to learn about approaches so that you are better informed so she is not a step ahead always.
I would also suggest being clear with her about where you boundaries are, I felt afraid that if I was too harsh or stern, or unbending that she would run away or hurt herself, I was afraid to do it,. But one day when she was in the unit I had a call saying the she was messing about and not gaining weight and if she didn't gain weight then she would be out. At this point I said to her during a phone call that 'I can't do this anymore' that did seem to pull her up not a miraculous transformation but a more thoughtful approach and she di gain weight marginally each week. So I would advise being clear where your boundaries are.
I would also strongly advise somehow having time for yourself, I know that this can be hard as my daughter needed to know where I was all of the time my presence gave her a security I am not sure that this was the right thing to do for myself, so if you can get others to stand in so that you can have a break that would be good. maybe there is an evening class that you could go to, just a distraction , something that is set up and therefore you have to go.
I would like to think that I would do it better now, I just hope that I never have to, wishing you the best
Posted 4 years ago
This has been such a true statement for me as I have supported my adult child through their eating disorder over the last 6 years. It has been very difficult at times. At times I felt as if the rest of the world was going on around me, and I was standing watching through an invisible wall, watching a world full of colour and joy from my sad black and white world. I was jealous of others in the supermarket shopping for a family meal, of the happiness on their faces. I wondered if we would ever get back to anything that resembled family life. I felt that I had to put my feelings on hold. I often felt as if I was walking on eggshells, afraid to say what I wanted to say in case the reaction was too damaging. I had to put the needs of my ill child before the needs of their siblings; trying to cajole them to keep a calm household and then managing the damage limitation when they decided to say what they think. I became expert at supressing my own feelings until lying awake at night the tears would come.
I am happy to say that although we will never be as we were but we are in a different and just as good and knowing place and at last the family dynamic is much better, the sibling relations have improved and my child who was so ill and fixated is a lovely young woman again, she is not fully recovered but she is so, so, so much better. There are times now when I can even forget about it all, something that I never imagined in the darkest days.
I am making this post to give you hope and strength to get through the challenges of the day. I would also like to say don't neglect yourself and your own feelings in all of this, as you are likely to be crucial in supporting recovery, it may not always seem like it, you will often feel disappointed about situations and response, don't hang onto those, keep a mind of the positives that happen. With your support, understanding and encouragement over time there will be more positives than negatives.
Member 1 post
I just read your reflections and I have to say " thank you so much" . It just makes me feel better and less hopeless. I think I will read it every morning to help me through this recovery path. I hope I will be able to say the same things about my son one day. I just don't know if I will have the energy to hang on for God knows how long. How could you do it for 6 years? Amazing!
Oh thank you Izzy, I do hope that things go well for you and your son. About a month into the illness someone told me that it took her 3 years to recover, I thought NO WAY we are getting this sorted by Christmas. The 6 years have not all been as sad and dramatic as the darkest days, but those days do leave a shadow. I think she got through it because none of us would give up on her. I couldn't have looked after as well during the most troubled times; she spent the majority of the first 2 years in 2 different ED units; they broke the back of the obsessive nature of the illness - I was so rubbish in the early days, she knew which buttons to press she knew how to get what she wanted and how to destroy me, so although I think it was tough for her to be away and she did learn other Anorexia behaviours and she hated the competition amongst the patients to be the thinnest to cheat the nurse etc. but in the end she decided that she wanted recovery.
The hardest days were when she left the unit and was thrown to the shoddy patchy opinionated ill informed and generally rubbish out patient care. She was trying to co operate in her own way but the lack of specific ED knowledge of the illness of the care professionals meant that they did not know how to really support and enable her. In the end she gave up on them. She started working again almost as soon as she came out of the unit she was desperate to get back into the real word to have money to feel that she has a place. Her memory of her inpatient stay and a few years afterwards is patchy, but her memory is much better now she has also developed depression. I am telling you this because I want you to see that it is an upward spiral, its not a straight forward trajectory, some days it is 2 steps forward and one back, some days have just had to be given up on and the next day brings a fresh start. She had colour reflexology at the beginning of Summer and that has begun a process of self acceptance, its been wonderful. She has now resumed her education in something she believes in and is living away from home, Last week I dropped her back at uni she had her rucksack stuffed full , with her necklaces and useful things hanging off of it, she had a cool bag full of freezer food, and a few other bags, I felt so full of love for her and the battles that she has fought, and I recognised the daughter that I worried I would never see again, she seems happy, she seems to be looking after herself, if I had won the lottery I would not feel as good about things as I feel about her recovery, I realise that anorexia is a coping strategy; wherever you can try to get him to talk, reflect, discuss what is generating his fears and anxieties and listen. Look after yourself and you will be able to look after your son and you will be able to tell of his recovery. And when you feel like it let me know how you are doing.