It’s very, very difficult to describe the mental torment that can suddenly twist itself in and around the brain of someone suffering with an eating disorder. I’ve struggled to find the words.
You can perhaps imagine the immensity of my relief when I stumbled across a talk given by an American doctor called Laura Hill. I was searching through TED, looking for interesting talks. when I first heard her. I was amazed when she began to describe ‘the noise’ in MY head, when I am faced with choices about food. I had that overwhelming sense of awe and relief and terror that you get when somebody describes your innermost, thus far unarticulated, maybe even unformed, thought traces… You know the one, right? That whole ‘strumming my pain with his fingers, singing my life with his words’ thing?
What she proceeded to do blew a hole right through me.
She had a tape recording of what she called ‘the noise’. The noise experienced / heard by an Anorexic whenever they have to think about selecting food from a menu, a supermarket shelf, a fridge, freezer, list or lunch bar. She played this raw cacophony of voices, a medley of ordinary conversation, accusatory interjections and deeper inner ‘voices’ commanding, bargaining, questioning. Listening to it, I feel as though she has somehow wired up my brain and translated every thought, every voice, every snippet of inaudible agony, into words and sentences. It’s the chaos of the calories, the constant mathematical equations, ratios, percentages that need to be calculated in order to work out how much energy is allowed, or NOT allowed. The numbers that fly in and out, unable to find a carpet of reason on which to rest, the foods that fall into the red, the orange and the green zones of safe and unsafe foods; the protein, the fat, the carbs, the fruits; whether I’ve been more active or more sedentary; the form the food takes…. All these factors dart like pinballs across the Anorexic’s mind, making a noise that you could drown in.
It’s noise of the kind that you might expect in the psychotic mind. Noise that, for me, doesn’t stop unless I make the decision to abstain.
And then
silence
complete peace.
https://www.youtube.com/watch?v=m0M-lbItSqk
I tried to put together a video using Dr Hill’s sound clip. It’s not brilliant. I’ve never done it before… But it might make someone else feel understood… or give a little insight into what is happening in the mind of a loved one as they try to pick a snack, or a meal.
It might help somebody understand why it is so very difficult to recover. It’s not just as simple as ‘eat’, because just thinking about eating invokes the noise.
What I have tried to do is to argue with this noise, shout back at it, reason with it… But this is rarely helpful and I have often resolved to skip the food in the desperate rush to close down the clamour.
What I am now trying to do, is to allow the noise to exist without giving in to it. Allowing it to happen but still allowing nourishment of some kind. I hope that the practise of this will eventually afford me a ‘quieter noise’, a lower volume if not complete peace. One day, perhaps they’ll research this illness more and find a drug which will block out the noise and the panic, but for now, I will continue to work towards recovery despite the noise.
Does anybody else identify with this? If so, what helps you and how do you deal with it?
Lastthingoutthebox 
Fascinating. Sounds like you need to anchor yourself to a strong, loud narrative to be able to keep the white noise in the back.
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Yes. That is exactly what I am working on.
Thank you for reading…
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Hi Fireflyby! I “met” you on A New Name blog, through one of your recent comments, so I came here to hear more–and I’m so glad I did! I really like your video and Dr. Laura Hill’s presentation. Even before I watched the videos, I was thinking of writing something that was confirmed and understood by both of you, but from the opposite side of anorexia. My sister was born with Prader-Willi Syndrome, a compulsive eating disorder where the brain lacks the ability to tell the body that it’s full. Therefore, people with PWS are ALWAYS hungry, NEVER satiated, and thus, forever thinking about food and how to get it. A controlled food environment is extremely necessary. So, we siblings grew up with locked pantries and fridges, not even knowing that her problem had a name or was shared by anyone else.
There are varying degrees of mental maturity in PWS; my 53-year-old sister is about 8 years old mentally and emotionally. She’s been mostly stable in her weight and diet for 10 years now. But, as she’s aged, other physical problems associated with the syndrome have worsened and she was admitted a few months ago to an inpatient program devoted solely to helping people who suffer from PWS, the same place that put her on a solid diet foundation 10 years ago. Here’s where your and Dr Hill’s videos come in. I hadn’t thought of it before: over all the years I’ve known my sister, I can only imagine the constant noise in HER head as she is constantly on the lookout for food and opportunities to grab it unnoticed.
As I visited my sister over the weeks of her program, one thing began to clearly stand out. Inside this hospital, among several other patients just like her, I saw her enjoying life in a relaxed, carefree way that I’d not seen before. And, it was because of something Dr Hill said. She said “Recovering Anorexics treat food like medicine: pre-planned, pre-dosed, and prescribed.” That was what I was going to write about my sister.
For 10 years, her food has been planned for her, though in a less controlled environment, she’s often been able to manipulate people for more. Once she is in an environment where menus and amounts are prescribed and completely taken out of her hands, and where she is incapable of manipulating the food providers, paradoxically, she feels safe. Safe being defined as knowing she can’t successfully threaten or manipulate, but also knowing she’s being cared for. Remember, this is from the viewpoint of an “eight-year-old” who has to trust others to take care of her. I don’t think the noise has necessarily gone away, but that “food plan” does offer a huge relief over the noise that plays in the background (like the example of the dad and daughter interaction at the restaurant, in Dr. Hill’s video).
My sister doesn’t fight the mental battle as you do (“Why can’t I turn off this noise?!”), but I have a new appreciation for what she suffers through. During her two month inpatient stay, I also had a clearer vision of what Jesus has suffered on her behalf. Somehow, He KNOWS exactly what that noise is like, having lived her/your life, having died her/your death, and is even now, still interceding on her/your behalf. Speaking of the battle, I’m going to quote Emma’s hubby, Glen, from something I copied off of his blog many months ago. I don’t think he’ll mind:
“Your righteousness is entirely outside and above you. These problems do NOT define you. Your success at handling these problems does not define you. Christ defines you. The Spirit will strive with the flesh as long as we live. And when our problems get on top of us, we feel like we live on the battlefield. We don’t. We fight on the battlefield, but we occupy the high ground–seated with Christ. Our righteousness is secure. We don’t struggle FOR but FROM freedom.”
Thank you for speaking, Fireflyby, and also for listening. With love and prayer, Valorie
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Dear Valorie
I am immensely touched by your story and although you don’t necessarily state it here, by the pain and confusion that you must have suffered throughout your childhood and the subsequent years.
I have heard of PWS and can well imagine that there are elements of this illness that are very similar to those found in Anorexia and other EDs. I don’t know how it must be for your sister but I have certainly experienced the feelings of never being satisfied / satiated and the terrible noise that runs as a background to all else.
The video I made frustrated me somewhat because due I suppose, to my lack of experience with these things, I didn’t get the sound levels right and so Laura Hill’s audio track should have been SO MUCH louder! But I’m so glad you got the gist anyway.
I’m also glad that it confirmed something that you knew and will hopefully, increase your urge to write from your experiences. People out there need to read about your story. They need to hear your voice as well as your sister’s.
There is not enough stuff from siblings who grew up next to EDs.
I write because I want to help others understand and I can’t tell you how privileged I feel that you bothered to come here and read / listen and then share your own thoughts. Thank you so much. I’m also very grateful for the bit of Glen’s wisdom. I will copy it out.
Right now I’m clinging to whatever I can as I face some very tough challenges. Bless you and thank you. I hope your sister continues to know the safety and freedom within ‘boundried’ eating.
firefly
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Thank you, Firefly, for your very kind comments. Growing up with someone with PWS was stressful, but I think the most pain was born by our mother, who blamed herself for my sister’s compulsive eating. Because she had the classic “failure to thrive” symptoms as an infant and had to be force-fed for so long, my mom thought that she had sent the message that food was all important. Of course, we know now that wasn’t true. But, it wasn’t until my sister was about 20 years old, that her illness was identified, and another 20 years before it was treated. It’s been wonderful to have guidelines and treatment “boundaries” in place to help my sister live a safer life. But, during these last few years, as I’ve become a bigger advocate and care provider for my sister since our parents are no longer able to do that, she has—through no intent of her own—reflected back to me my own weakness and inadequacy. I often tell people that I feel like I’m the “handicapped” one. Mostly because I feel like I SHOULD be strong and capable. And yet, I’m in the same boat with her, you, and everyone else who faces the kind of challenges you speak of, whatever they may be. I believe you when you say you’re facing some very tough challenges! I am encouraged by your simple clinging to hope, and for admitting the struggle here or on other blogs; by your sharing your weakness and therefore, acknowledging the need/desire for community. I guess that’s why I stopped by as well. We all need each other, especially with all our weaknesses, and to hear the Good News that Jesus has walked and is walking every challenging step with us.
With love,
Valorie
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You are clearly a beautiful being Valorie. It is painful to see our own inadequacies reflected back to us, and unnerving when the person doing that is someone we must see and ‘deal with’ all the time. Yet, it forces us to face things we may otherwise never have noticed.
Like the process of refining, having to recognise and deal with these things only serves to make people, eventually, stronger in the broken places and more able to reflect the lightness and beauty that comes from grace and acceptance.
I can already see those things in you through what you write.
You are so welcome here. I look forward to reading some of your own writing in the future
firefly x
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While the particular issues that have led to a comparable ‘noise’ in my head are not ED (for me, it’s more related to self-injury compulsions and periods of mild psychosis), I absolutely relate to what you are describing — and to the approach you are now starting to take. I too have found that arguing, fighting, attempts to banish or control the noise (or voices, or what-have-you) is less than helpful. Rarely works — and often exacerbates the issue, making me feel the need to just disconnect from all of it.
Progress for me finally came through a process of making peace with all the clamoring happening in my head. First, just trying to coexist with it. Then, like befriending a particularly challenging young person, trying to see the logic in the voice’s illogic, if I could. Understanding that the parts of me that speak through that noise do *want* good outcomes for me — they/it just tend to have appallingly bad instincts and judgment. And my clamor also tends to communicate metaphorically, I’ve decided, like dreams do.
Anyhow. That’s been my experience. I think your idea of trying to let it happen, and getting on with your own needs regardless, sounds great. I hope it brings you some relief!
Best,
alice
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Hi Alice and thanks for stopping by.
It’s a really important point that you made about the noise not necessarily being purely an ED thing. I am more than aware that others experience this noise, particularly people experiencing psychosis, or severe depression.
I’m so sorry to hear that you have to fight the compulsions to injure yourself. Those intrusive thoughts must make the noise hard to deal with. It’s interesting that you too have found some peace in the discipline of trying to find some logic and reason within the noise.
Thanks so much for sharing your experience. I pray that your insight continues to sharpen and that you can eventually grow enough strength to carry you through the really bad times.
firefly x
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