In a few days time, I will have been in hospital for 16 weeks aka a grand total of 4 months, and because of this, I am often being asked questions like “How are you getting on?” or “are you feeling better?” which are both very complicated and difficult questions to answer when you are in treatment for an eating disorder. You see, on one set of paper work, things are going rather swimmingly and I am indeed doing much better, yet on the other set of paper work in my opinion, I am actually feeling and am “doing” worse than I ever have done in my life.
Oddly enough, this discrepancy between paper works is not because I have two very different doctors with opposing ideas writing sets of notes about my progress, but because when it comes to recovery from an eating disorder, there are two very distinct and different sides to it, the mental and the physical, and unfortunately these two sides do not work as sleeping otters do (aka hand in hand – yes, fun otter fact for you, otters hold hands when they sleep to make sure that they don’t drift away from each other. Apparently they also make waterslides and play with pebbles. Conclusion: Otters are cool).
Indeed the two sides to eating disorder recovery are so separate that I think that asking someone in treatment for an eating disorder how they are, is a question that needs to be asked twice, once for each side of recovery, because otherwise getting one coherent answer is impossible.
To be fair, towards the beginning of my admission, the physical and mental sides of how I was doing were fairly in sync. Mentally things were a bit all over the place and physically things were too. This then continued as I struggled to work with the program at the eating disorder hospital, until the introduction of my NG tube and since that most unwelcome introduction, everything has changed, in my eyes, for the worse.
Before, when I was mentally struggling and didn’t feel able to manage food, I was able to avoid it which obviously didn’t help my body very much but it prevented my anxiety levels from getting worse. Now though, since the NG tube, I have a constant and unavoidable source of nutrition and it doesn’t matter how I feel, food cannot be avoided. If I don’t eat, the food still goes in, and consequently my mind is in utter turmoil. My body on the other hand is as they say “loving life” and ironically, it is killing me.
Seeing as food is unavoidable now, I have been following my meal plan in one way or another for weeks and the affect this has had on my body is dramatic. I am gaining weight faster than I have ever gained weight before (perhaps because I have never had such an unavoidable source of nutrition stuck up my nostril before), so health wise, I am “improving”. I am no longer at a weight where I require a wheel chair, I am now able to stand in the shower for long periods of time, even on one leg (I am a fantastic flamingo impersonator these days), and when I get out of bed in the morning, the world doesn’t swim before my eyes and go black. Objectively these all sound like good things and for the medical professionals and my friends and family, these are good things but to me, these are terrible things.
I really don’t know how to explain this idea to people who may not have eating disorders as I know that to most people it sounds absolutely ludicrous. Physical health, the ability to stand in the shower and walk down the corridor are abilities to be appreciated not feared, but when you have an eating disorder, these abilities mean entirely different things.
To me, not being able to stand up without things all going fuzzy was a sign that I was “behaving” myself, a sign that I was doing a good job at punishing myself so the guilt I felt at being alive was lessened. Now though, I am unable to “behave myself” by not eating because even if I don’t eat the food will go in without my permission, so with things not going fuzzy, it is like a sign that I am doing something “bad” (even if it isn’t always me who is doing the eating), and I guess I am feeling all the guilt and shame as anyone else would were they to do something they thought was bad, like stealing or punching someone in the face.
Now I take up too much space in the world and with the weight going on as it is I take up more and more space each day, which is something I have always struggled with. When you hate something you want to make it as small as possible (or you want it to disappear altogether), you want it to take up as little of the world’s space as possible so as there is more room for the good things. In gaining weight I feel like a weed taking up too much space in the flower bed and stealing all the sunlight from the marigolds.
It is incredibly hard to watch this body you hate, morph in front of your eyes into this thing that is getting bigger everyday, getting “better” everyday whilst inside you are all the more depressed and tormented.
I don’t have any idea if I am making sense here because to be honest I am on so many medications right now that my brain is not functioning but if I had to resort to the good old Born Without Marbles way of explaining things, aka an analogy, it feels like my body and brain are one of those cars people drive off in after a wedding with tin cans on the back and “just married” scrawled across the rear windscreen.
My body is the car and as it gains weight it is zooming off full speed. Meanwhile my brain is the collection of tin cans tied to the back, being dragged along and through all of this road that it is not ready for, each can bouncing and denting, bruising and breaking a little more with every mile that passes. My body gains weight, my brain cracks a little more, I feel more broken, depressed and bruised and the faster my body goes the further it is from my brain which is actually all the way back at the starting line. I guess this analogy isn’t perfect because you could say “but your brain is moving in the right direction like your body if it is tied to the car” but that is where the analogy fails because that is not happening at all, like I said, as the car moves the brain just gets battered and even staff have admitted that in the past few weeks things have mentally become worse and worse as time has passed and weight has gone on.
Christmas day is a perfect example of this. When I woke up on Christmas day I was weighed (NOT something I asked Santa for and if I ever wake up to a set of scales in my stocking on Christmas morning again I swear to God I am marching to Santa’s grotto to give that beardy man a piece of my mind…and his scales back), and I had gained a lot of weight. On paper then and to the doctors, my body had got “better” but mentally the shock of it all had such a strain on my mind that I totally lost it. Within minutes I was having to take medication to calm down from the anxiety and agony and when my family came to see me for our two hour visit, the visit wasn’t better for the weight gain, it was worse. It should have been better logically, my body was healthier than the last time they had seen it but in becoming that way I became so upset, distressed and anxious that I had what we shall simply call “ a little incident” and I had to ask my family to leave early.
It is that which I think illustrates my point best as to how impossible it is to answer the question as to “how are things going” when you are in recovery for an eating disorder. Am I better? In a way, yes and I am getting “better everyday”, but in the other more important mental side am I better? Am I progressing? Not at all. I hate myself more than ever, I am more unhappy than ever and I feel more trapped than ever in a body that I no longer relate to. The distance between my body and mind is so great now that I have asked staff if there is any chance we can slow down on the weight gain so that my mind has got a chance to catch up but they are refusing and it all feels like I am being dragged and pushed too far out of my comfort zone. I am in hospital being treated for an eating disorder and the physical problem is being taken care of by a tube, but the mental aspect is being torn apart and I really don’t know how much longer I can handle it.
It is so frustrating trying to explain all of this and I guess in the end the main thing I want to do at the end of this blog post is apologise because I feel like I haven’t made any sense and that I have wasted your time with my incoherent waffle. Like I said though, I am on all sorts of crazy meds at the moment (to calm me down because I am in so much distress due to this whole struggling mentally with the physical progress my body is making right now when I am not ready for it), so please blame those meds and not my inabilities as a writer. I don’t understand half the things that are going on at the moment so explaining them coherently is somewhat difficult. I really am sorry. I am just so battered. I hope this makes some sense at least or that I have got the point across in some way that physical recovery and mental recovery for an eating disorder do not go hand in hand and can sometimes be literally travelling in opposite directions. “How are you doing?” is such a simple question but good lord when you have mental health problems is it a difficult one to answer.
Take care everyone x
Born without marbles 
You explain it really well. Thank you for writing. x
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Thank you so much! I really appreciate that, you are a lovely human being xxx
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You are a very lovely human too! Sorry to read about how much you are going through at the moment.
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This absolutely does make sense, you explain with real clarity. Which makes it even harder to read. I know this will not mean anything to you and you do not want to hear it and will not believe it BUT I don’t care I’m gonna tell you anyway. You deserve to be taking up space, if space was proportional to brilliance you would be like the size of a giraffe or something. You ARE one of the marigolds, you should be stretching up and reaching the sun that is giving you life after many years suffering in the undergrowth. Carry on up and start PHOTOSYNTHESISING amigo.
The idea of your brain crashing and knocking around on the floor as your body is dragged somewhere you don’t know and aren’t in control of does sound really hard, and I don’t blame you for not finding it easy. But as our friend Dumbledore says, sometimes you have to choose between what is easy, and what is right. And I hope you know that being able to stand up on your own and not passing out is the right thing, in the end.
Thinking of you and wishing all the million best wishes I can wish
xxxx
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EVERTHING THEY JUST SAID AND MORE ^^^^^
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Damnit, *EVERYTHING
See, I care so much about this that I lost my ability to spell.. That is how important it is.
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I LOVE YOU ZELDA xxxx
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P.s. Also hi Amy this is Alice J from Brasenose *waves*
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THANK YOU SO MUCH FOR THIS COMMENT I CAN’T EVEN. THAT IS RIGHT. I HAVE LOST MY ABILITY TO EVEN. It is so incredibly kind and lovely of you to say such incredibly kind and lovely things. I have never been so honoured and touched to have been called a giraffe or a marigold who needs to start “photosynthesising amigo”. I want to say more because I feel this reply isn’t enough to thank you for all that loveliness but I honestly can’t think of the words to say how touched I am to hear those words be said about me. You are a truly wonderful human and an even better friend and I hope you know that I think of you as a fantastic giraffe marigold hybrid as well. I mean that from the bottom of my heart. MUCHOS love and thanks, have a fabulous day xxxx
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Oh, my dear, I’m so sorry. I don’t even know what to say.
I can relate on so many levels! The way you explained things… so accurate, so true, so sad…
You are so beautiful, amazing and talented! I truly wish you could see the same girl I see. Your weight doesn’t matter, your body is just a vehicle to carry your amazing brain. You are beautiful no matter what. You are loved no matter what.
I know you’re not happy with all the body changes but I AM! It means that my lovely friend is still alive and functioning.
I LOVE YOU KATIE! Just know that you are in my thoughts and prayers.
Big kisses from Portugal<3
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Don’t be sorry! It isn’t your fault! I am however extremely sorry and sad that you can relate to this because I know how horrible and traumatic it is to feel this way. I wish you could see how amazing and lovely you are! Damn this flipping illness! Still thank you for making me feel less alone and for being so kind and supportive. I love you very much and hope you are ok, remember I am always here. Kisses from England xxxx
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Aww, my dear. You so deserve to take up space. You really do. You are amazing. Everyone wants you here. I am concerned that they are not treating you (for the mental aspect) in this hospital. Do they have therapy, groups, skills classes, etc.? If so, are you able to participate? That’s going to be vital, I think. I’m wishing you well!!
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Thank you so much for this comment, you are so good to me. In response to your question though yes this hospital does have groups but I am not allowed in them at the moment so really the mental aspect of things isn’t getting treated anywhere near as much as the physical side which seems the priority. Staff are always available to talk to but problem is I find them hard to trust because there is such an emphasis on physical recovery so it is partly my fault that the mental stuff just isn’t working I guess. I don’t know, I just wish things would sort themselves out soon! Hope you are ok xx
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You aren’t allowed in groups? They’re just isolating you? That seems messed up. 😦 I know you’re having trouble trusting staff (hey, I have trust issues too!) but I hope you can try (or try to try?) to start reaching out more. What about writing little notes on pieces of paper and sharing them, if you’re having trouble speaking up? Might be a silly idea but I’m somewhat silly!
Also, I highly recommend the book “The Subtle Art of Not Giving a F*ck” by Mark Mason. It’s starting to help me (along with starting ketamine treatments)… we would all do better if we gave less fucks about most things!
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Your worth is NOT in your body weight. Look at the talent you have displayed here & I believe this talent is NOT only associated with writing about an eating disorder. Allow yourself to love yourself-I’m not talking about loving your body BUT LOVING WHO YOU ARE. I hope you are receiving help for your beautiful mind as well as addressing the physical consequences of this life robbing mental illness. Love to you 💕
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This was such a lovely comment, seriously thank you so much. It is so hard to see what other people see but I am really going to try and trust you on this one because I like your opinion of me a lot more than I like my own! I promise I will keep working hard to see what you see and thank you so much for such lovely and kind support, I really appreciate it. Hope you are ok and are having a fabulous day, you are a wonderful human bean. Much love and hugs xxxx
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You explain this with remarkable clarity and accuracy! I think this why anorexia is so challenging to recover from- the physical recovery is mentally excruciating and triggering. I know it does not feel possible, but I want you to know it does get better. The impossible happens! It is actually possible after years of anorexia to break free and experience liberation from the mental chatter and distress. You are fighting the hardest battle right now and you are doing it! I wish all the strength and motivation in the world.
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Why thank you! I was so worried that nobody would have any idea of what I was trying to say with this post so I am glad that you understand me! Also thank you for the reassurance that this kind of thing can get better and that the seemingly impossible can happen. I am really going to try and trust you on that and hold out the hope that things can turn around soon. Really appreciate your kindness and support and hope you are having a wonderful day. Much love and hugs xxxx
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You explain this really clearly – you are such an amazing writer. Reading your posts always helps me understand more about what it’s like to suffer with an eating disorder or mental health issues. I really really admire the way you can articulate your experiences. I am sure your writing must help lots of people and I think it’s something to be very proud of. You’re so amazing.
I wonder if you’ve come across Emily Troscianko’s writing about anorexia? https://www.psychologytoday.com/experts/emily-t-troscianko She had anorexia for just over ten years and then recovered. She writes about what helped her recover after being ill for so long. I hope you would find it interesting if you don’t know it already.
I am really sorry you’re going through such a rough time at the moment and I hope things get easier for you soon. Sending lots of strength (and penguins … helpful penguins!) your way. 😀
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Thank you so much! I was so concerned that nobody would have a clue what I was trying to say in this post so I am glad that you could understand to the point of saying that I was writing about this clearly! Seriously your comments about my writing have really made my day. Shockingly despite writing about my own experiences, I haven’t come across Emily Troscianko’s writing so I am going to have to look into that and thank you again very much for the recommendation! I always love hearing about other people’s stories especially when they have a positive recovery spin to them! Really appreciate your support and hope that you are ok/know that I am always here for support if you ever need. Have a fabulous day and know I am wishing much love and hugs, THANK YOU xxx
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Ah Katie I’m so sorry it’s so awful. You are doing all that you can right now and that’s all you need to do, just try and let others prop you up for a bit. The mental and physical recovery as we all know sadly don’t always move in tandem with each other, but one cannot exist without the other, so as much as it feels terrible to be getting physically healthier, it is the only way you can move forward in the end and beat this bastard illness xx
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This is indeed one hell of a bastard of an illness! Thank you so much for your comment and support though, I think it is safe to say I need a lot of propping at the moment so I am really grateful for your kindness. Hopefully things will start moving a little more in tandem soon and in the meantime I will keep fighting with my fingers crossed that it will get better! Hope you are ok and have a fabulous day, Much love and hugs xx
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I TYPED OUT AN ENTIRE COMMENT AND IT DIDN’T POST! :O Okay, breather sophie and type again…
I’m going to offer an alternative perspective (and truth, in my eyes)
ANOREXIA is the weed. Weeds are what destroy the flower and anorexia is what tries to destroy KATIE – Katie is the flower, not the weed, not the enemy. Anorexia is the enemy, the thing that is bigger than anything else at its most powerful.
Anorexia is the thing others see too – it doesn’t conceal you, as those who care about you will be terrified when they see the physical manifestation of the illness. That is the irony of the concept that anorexia “makes us invisible” (which i know i’ve felt before).
But anorexia also cannot hide from OURSELVES. It is visible from the sensation of passing out, the pain as we get up from bed and the torment as we try to stay above water. Anorexia is NEVER invisible, as long as it is present and it never offers us comfort. We may think that avoiding food provides respite, but in reality it only intensifies the grip of its weed-like hands.
Yet you are NOT anorexia. KATIE is not the weed. Katie is the penguin-saving, pun-typing, hashtag-loving QUEEN of Sunflowers and possibility. Katie is EVERYTHING that the weeds of anorexia try to destroy.
Right now the weeds might try to be swallowing up the words i’ve just typed – telling me that they are petals of pity, for want of a better metaphor. And perhaps anorexia has a point? Words are far easier to give than actions after all…
But then if that’s the case, anorexia has forgotten about PENGUIN COASTERS AND T-SHIRTS. Trust me, they are far less straight-forward to find and make! But i wouldn’t take it back for the world, because i truly care about KATIE and want to remind KATIE of all the things that make KATIE… KATIE! Have i said Katie too much?
Kooky,
Antarctic (yes that’s an adjective),
Talented
Imaginative
Empathetic
KATIE KATIE KATIE ❤
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Wow. Thank you first for typing out such an amazingly fantastic comment and thank you second for typing it out twice when it failed to post the first time! Seriously the dedication is admirable! I absolutely LOVED your metaphor and am really going to try and get that image into my head rather than the ones that are currently taking up brain space that would be far better if is was given to your words of wisdom! Seriously thank you so much for this, for being so lovely about and to me and for offering an alternative perspective of anorexia as the weed instead of me. I really appreciate your support so much I don’t know what to say. SOPHIE is awesome. SOPHIE is the best and to SOPHIE I am eternally grateful. Thank you. Lots of love and hugs and general penguin awesomeness coming your way you beautiful fantastic human xxxxxx ❤
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I like this. 🙂 Great way to put it! This disease is not you, Katie.
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Oh, Katie, I am so sorry that you are feeling so desperate right now. I do understand much of what you wrote. I especially understand what I think I was hearing. I could be wrong, but I think I was hearing that intense sense of agitation, a mental restlessness and agitation so intense that you might just jump out of your skin. It is an irritability, catastrophic thinking, paralyzing, desperation, tension, and anxiety that is so intense, it feels it will carry you away or explode right out of your body. In the throes of it the world is quite distorted and our sense of self is too. I am sure that is a horribly simplistic description so please do not feel I am in any way assuming I know your feelings or minimizing them. It is indeed depressing. Some hold it inside and don’t let it any outlet at all, some explode into anger, and some harm themselves to relieve the tension and anxiety. I hear you and believe you when you say that you hate yourself and cannot tell you how sad I am. I heard my son say that back in the day and it was more difficult than words could do justice. I remember asking him if had really taken an inventory of what exactly he hated. What was it he had done that was so hateful and didn’t exist in other people that he didn’t hate, but in fact liked and respected? He hadn’t done anything so dreadful or unforgivable and, while I don’t know you personally, I would put my money on the fact that you haven’t either. I asked my son if what he hated so much was that sense of internal turmoil, that agitation and tension that could only find relief and a few minutes of quiet when he starved himself and punished himself. Having OCD since I was a teenager (a long time ago, I’m sorry to say) I know that internal inferno. There are not enough fire hoses sometimes to even calm it down. I also remember when I felt that fear of giving up my symptoms. Crazy, isn’t it? Something you hate so much has become so much a part of your life you don’t think you would know what to do without them. Suppose I lose control? Suppose I don’t have them to blame anymore? Suppose I go out there and try to succeed and fail? Without my symptoms, who could be to blame; I am just a plain failure in my own right, correct? If not these OCD symptoms, how do I manage my world and my anxiety? I can’t, right? Those were the same questions I asked my son when I challenged him to take a chance because he had nothing else to lose. I’ll be here, I told him. It will be hard, but there will be something to substitute in their place. I don’t plan on letting you die, so you might as well figure out something to do while you’re here (probably not my finest moment on that last one and please don’t think I am making light because that is the last thing I would ever want to do. He understood my unusual sense of humor, fortunately). The point to this ridiculously long winded reply is that I have felt those feelings and I did challenge them and it did get better, but it wasn’t easy. My son did get better and Katie, you can too. There are very few things that are really all or nothing in this life and where you are now, horrible as it is, isn’t one of them. I hope that you find a very good therapist who can work with you through these feelings and hope also that I have not offended you in any way. As a previous poster commented: you are a giraffe!! You have a large brain and a large heart. There is plenty of room for you and you have a purpose here and work to do.
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YES. That intense agitation and restlessness where you might jump out of your skin thing you described is EXACTLY how I feel and is exactly what I hoped to get across in this slightly waffly blog post.
I always love hearing about your experiences with your son (please don’t take that the wrong way…I don’t mean that I love hearing that your son struggled with similar things just of other peoples experiences that make me feel less alone in all of this), and funnily enough I had the exact same conversation of “what did you do to make yourself hate yourself so much” with my mum the other day. Much like you said to your son she cannot think of anything so terrible that I might have done but that self hate is still there. I also related incredibly hard to what you said about worrying about losing control without symptoms because that is a worry I find myself thinking about a lot. You are right, it is all pretty crazy! Thank you so much for making me feel less alone with all of these things and for reassuring me that there is a chance out there of things improving. It gives me a little bit of hope that I am afraid I am sorely lacking at the moment and I am going to have to try my best to trust you on that giraffe thing! Seriously thank you so much for your support, I really do appreciate you going to such lengths to help me. Thinking of you and your family and hope you are having a fabulous day xxx
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Dearest Katie,
Every word of this made sense. And I get it.
I am waiting for a bed to open up on the ED inpatient ward, and between my brain being totally fried from the ED sh*t and attempting to get my “real life” in order (including moving, dealing with a bad injury from work, and my car possibly being a write-off after a truck slid into it) before what will probably be at least a 16 week stay as well.. I am swamped and overwhelmed. I literally think about you every day as I prepare for admission, and wonder how you are doing.
I’ll keep you updated, and we’ll be in touch more as soon as I’m locked up too!
Hugs from Canada,
Stephanie
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Dear Stephanie,
I am so sorry to hear that you are in this situation and that an inpatient admission is looming for you. Obviously I am pleased in one sense because it sounds like you will be getting the help you so desperately need but I am sad that it has come to that need and that you are clearly struggling so much. Please know that I am thinking of you and am of course here for you if you need any support. Stay safe my dear,
much love,
Katie xx
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