Hope and thanks from me

A kind and generous message to the Around the Dinner Table community, below, by "inaweofyou."

The ATDT moderators can't allow posts by patients, but I'm glad to post it here:

Hey there. 

I wanted to make this post for you all. I'm pretty sure I am not allowed to post here as I am not a caregiver- so I will just post this one post to you. I do respect your rules, I just didn't know how else to tell you all this.

I came across this site about a year ago. I have been looking at it on and off. I have cried reading some of your posts. I have rejoiced with you when your children are doing well. I have felt such an ache in my chest for you all.

You are truly INCREDIBLE human beings and parents.

I live in Europe. I am a final year medical student and have suffered with AN and BN for the last decade. I am currently in intensive outpatient treatment and doing the best I have EVER done. I am making real changes. I noticed the use of a word that describes how a sufferer never really 'gets' that they are so ill. (ag...??!) I really, really agree with this. It's the strangest thing. I still find it very hard to understand why people get concerned about me. This illness is baffling.I have individual therapy twice a week. And five hours of group therapy. My therapist is recovered herself. I mean REALLY recovered. Free. Free of self doubt, perfectionism, low self esteem, never feeling good enough, extreme anxiety etc. She loves and respects herself now. She is amazing because she catches EVERY single ed trick. I mean EVERY. My nutritionist is recovered too. And sees through everything. They are like mind-readers. 

I have had 2 different psychologists in the past who hadn't a clue about what was going on with me. They clearly learned about ed from a book. But as I'm sure you have ALL realised, to understand an eating disorder- you need to live with one. You need to see your child disintegrate before your eyes. You need to see the empty eyes and the self hate. You need to see how little we feel we deserve. I honestly think you women are experts when it comes to eating disorders. Not because you always know the right thing to do or say, but because you TRY. You are experts because you've lived with it. It has infected your home and your lives. You have lived it. 

An eating disorder doesn't occur in a vacuum and I am so so so sorry that this monster has happened to YOU.Yes, you. You too are a sufferer. Let no one EVER let you feel you have it easy not being the sick one. We sufferers are numb to it. So numb. You are not. You really need to give yourselves such an amazing amount of credit for all you have been put through and survived, by this disorder. I often think you yourselves need to be in therapy too. I cannot even imagine how hard it must be for all of you. When I see you write kind words to each other, I get so happy. I honestly feel a little swell in my chest. You are so lucky to have found each other. You guys can do this!!!! Together you can do anything.

I was reading about the emotional anorexia side of things. This broke my heart. As I myself put my mother through the worst. Please let me explain. Ed fills our heads with thoughts and nonsense. It whispers. It picks out people to blame. I decided MANY years ago that everything was my mothers fault. I honestly couldn't look at her. The mere sight of her made me so angry. At the same time I craved her love so badly. I am the eldest child. I am the one that caused no trouble (pre ed obviously). I was the one that was the perfect child. I achieved and behaved. But while I did this I denied my need for human affection. I told myself I didn't need it or deserve it. I would see Mum hug my sisters and I would get so angry. Because I so badly wanted her love and hugs. If she tried to hug me I would push her off. It got so bad I just stopped speaking to her. I flinched if she spoke. I sat in a room she was in and inside I felt rage. I had all these DISORDERED thoughts in my head that she was the enemy. I'm not trying to upset anyone by saying this, and I am confident it was pathological and NOT just a teenage thing.

BUT- in the last year I have let her in. I don't know when the anger started to subside but with time I began to stop hating myself so much, and at the same time I began to stop hating her. I had projected so much of my self hate onto her. This past year has been such a turn around. I began to tell her I actually desperately needed her. I would tell her to leave me alone, while inside I was crying out for her. When she did leave me alone (as I had asked) it proved to me that I was unloveable etc. So please moms, do not give up on your daughters. It is so very much part of AN. 
The denial of basic needs such as a mothers love. It gets better. Me and mum do arts and crafts together now. We meet for coffee. We shop. We chat.  I answer her phone calls!!! I answer texts. I speak to her. I hug her. I let her hug me. For years I secretly wanted things to be like this, but couldn't seem to allow myself it. Please do not lose hope, things change. I promise.

I have read posts that make me cringe. I am so sorry to you all that you are so affected by this. That you bear the brunt of our horrific words. 

I cannot explain to you how deep the self hate runs. I cannot explain the never good enough. I cannot explain the perfectionism. But something that helped me and I learned in treatment was about being the highly sensitive person. Please look into this if you haven't already. I used to think I was wrong wrong wrong. Not a human. A mistake. But now I realise I am simply highly sensitive. I am learning to cherish this sensitivity. I am learning to not turn to self destruction. 

I want to thank you all. You have helped me sooo much with regard to my own mother. I would read what you wrote and apply it to my mum. I would ask myself if she could possibly care the way you all do. Dads- I wondered the same about you guys. 

My father comes to group therapy with me sometimes. He finds it so challenging as our groups are all about learning about sense of self, building self esteem, tips to deal with all the shoulds that go in our heads. Tips to help us deal with the feeling that we don't deserve anything. I cannot begin to explain to you how it feels to not believe you deserve to breath. Deserve to eat. Earn eating, earn love, earn sleep, earn rest. I cannot explain the guilt. The guilt for speaking, eating, breathing. But what I will say is that things improve. They do. Honestly. I have watched other girls in treatment blossom. Others see the changes in me. There is always hope. Never ever give up.

Thank you for always trying. Thank you for your never ending pursuit for the team effort to eliminate the ed beast.

Focus on life. That is what has helped me. Focusing on the illness and ed is very unhelpful because ed values sickness. Ed values self destruction. Ed gets a sick satisfaction at ill health. Focus on life. Where focus goes, energy flows. Focus on life. Call it life, not recovery. Your children are learning to live. Reward healthy behaviour and activities. Create a life worth living. Fill your child's life with fun and enjoyable activities. It really helps as we cannot do these things when we are unwell. It creates a motivation to have energy. 

I began collecting positive quotes. I know this won't suit younger kids, but it will suit teens. I collect quotes. Take photographs of beauty. 

I have so many fears about life. Fears about social occasions. I have poor coping skills for anxiety. But I am improving. Honestly, it gets better. It's not about the food. But it's not NOT about the food. The food fears are very real. But it's not all about the food and the numbers and size.

There are times I wanted to die. But I don't feel that way now. I don't know when the progress happened, but it did. And it does.

I have so much at risk if I choose to let my nutrition drop. I will lose the life I've been building. I will lose university. I will lose trust and friendship. I find it helpful when people point this out to me. Point out what is at risk. I find it helpful to write out what ed values- thinness, sickness, isolation, quietness, extremes, punishments. Then write what I (the real me!) value- family, uni, friendship, energy etc. Then people remind me if I'm living by my values. Sometimes I am not. It is a wakeup call. Ed sneaks quietly. Request self honest off your kids. Ask what they are avoiding. The fears are REAL to us. The fear of failure. The fear that no one likes us. The fear that we are too much. 

When we are having an ed tantrum- you know the ones   Screaming, tears, fist pounding, self harming, throwing clothes around, refusing food etc. There is ALWAYS something real behind it. I never realised this until perhaps a year ago. That real-life anxieties cause an ed meltdown. Ignore the meltdown and try to figure out what is really going on. Eg the sufferer is afraid to go to a birthday party. the sufferer is scared of some bully in school. Look for the real thing causing the heightened anxiety- I promise you there is something real happening. 

I have gotten such inspiration from this site. I have read your highs and lows. I don't know why I read here, but it gives me so much understanding for what it must be like for my loved ones. The frustrations, the worry. I am so grateful to have read what I've read.

Please never ever forget to stop taking care of yourselves!!!!!!!!!!!!!!!! I mean it. You are human beings who deserve the love and attention that you give to your children. Please show yourselves the same kindness. Please self care. Please go out and see friends. 

Please model healthy living. Remember you are our role models. You show us how to socialise. You show us an effortless relationship with food. You show us what normal is. Please show us that life goes on. We may be self destructing, but life goes on. Ed makes us act selfishly. It can be so helpful when I realise how much I am missing out on by insisting on dancing with my ed.

I'm sorry I'm still talking and if you read this you deserve a medal. I just wanted to thank you all for being so utterly magnificantly inspiring and wonderful examples of parents. I can only dream of one day being the strong and wonderful parents you are.

Keep hope in your heart. I am in final year of medical school. My bmi is healthy. I eat 3 meals and 3 snacks. I am building/repairing a fantastic relationship with my mother. I am socialising more, I am exercising only rarely, and for enjoyment. I am not recovered yet and struggle a lot. But I am getting there. And your child will too. Never give up.Keep holding the hope for your child, even when they are drowning with ed.

xxx

Comments

  1. Wow. This is amazing. Thank you so much to "inaweofyou", and also Laura - thank you for sharing. Such a valuable insight into what it IS like. I found myself nodding throughout - so much here that I relate to. I didn't have family support from my family of origin, but I know I've caused the same pain to my chosen family, those who love me and therefore worry. And I wish I could have said something like this to them, too. That it's not their fault. That I don't mean to be this way. That I'm scared and puzzled that something that makes no sense to me makes too much sense for me to actually stop doing to myself. Has so much power over me - my own mind - how does it make me unable to override it's illogical, deadly commands when I can clearly see they are going to kill me? And so much more.
    Thank you for sharing hope. And I'm so, so happy and exicted for you that you are fighting hard and have come so far - best of luck. Keep up the good work, keep up LIVING xx

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    Replies
    1. This is beautiful. I am so happy for you. I have had trouble writing my blog lately because, (1) I am focussing on life and my true focus in life is not about writing. Some bloggers are awesome writers and drawn to it ... and i'm SO glad they write often and well. However (2) i don't know what to write anymore without "focussing" on ED in order to write to/for people i care about, without sort of "ignoring" ED? If that makes sense. I want to talk about the stuff i do with my life now, and how i feel better, and how i am freer. I am NOT 100% free with all my "issues", but i feel that even non-ED people will always have their struggles. So, I appreciate reading about all the positive energy in your life ... and your new relationship with your mom. Keep on keeping on! xo Mel

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  2. As a caregiver I just want to say thank you! That was really helpful for me to read and understand suffers feelings towards us the caregivers. You are a beautiful person with much to share and help others along this ed road.

    Many many hugs and love to you!

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  3. Thank you so much for your concern to us, the caregivers. You are a beautiful person who in sharing your feelings has and will help many, many others along this ed road!
    Hugs and love to you!

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  4. Dear "inaweofyou",
    Thank you from the bottom of my heart for this wonderful letter you have written giving the caregivers so much hope. I had tears in my eyes and realise with time, nutrition, perseverance and unconditional love, it will get so much better. I am so grateful to hear your relationship with your mother is now close and you are well on to a road of recovery. Take good care of yourself and I send you Hugs in cyber space. My thoughts and prayers are with you through your journey and again, Thank You for your courage to write to caregivers. x

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