Sunday, 12 October 2008

Supporting Anorexia: Control & Intervention

Annie told me to pull this. She said it was hypocrisy. She told me tonight that she doesn't see a future for us. She told me tonight that she has no one.  That she thinks that I expect perfection. She thinks I don't love her anymore, and that she's not sure whether she loves me. Maybe I'm not acting like I do love her. Maybe I'm struggling with this ED more than I know. As I paste this post back into the blog, please remember that it was written over the course of a week. I hope it helps you, the reader, come to terms with just how rough it is supporting someone with an ED. Maybe you should ignore this and take it as a list of things not to do. Knowing what to do, and actually doing it, are sometimes two very different things.
I hope this doesn't come across as vanity publishing. I really do...
(Ian, 12/10/2008, 20:36)

So. Not posted for a while, and to be honest, this is the longest of them all I think.

Things have been pretty rough for me over the last couple of weeks. My boss has generously given me a few days off, which has helped enourmously to catch up on sleep etc, but it hasn't really helped with the "coping" which, at the moment, is getting harder.

It's difficult not having anyone to talk to. What's worse is the fact that Annie can see when things aren't right, and there is no point in lying to her. As soon as I discuss my fears, it seems her fears return even stronger and her renewed conviction that I'm going to leave comes to the fore. Before long, we're fighting, and I'm not even sure anymore why. We do now, seem to have reached an agreement whereby I can talk when I need to with Annie just listening. This is a tenuous agreement though, because when Annie's ED has a strong hold (or the effects of it), it becomes very difficult.

The girls were away last weekend, and with me devoting time purely to Annie, we had a lovely time. No worrying about cooking, no pressures on me from work, and just a nice peaceful time to relax and enjoy each others company. I dragged Annie out on both days, and we enjoyed a short walk down by the river on Sunday, blowing the cobwebs away, and generally just chilling out. The best news of all for me though, was that Annie managed a light lunch and an evening meal on both days, which must have been tough, but as we discussed later, was made easier by the fact that there were no pressures from the kids or any other extrnal sources.

Monday wasn't so good. I went into the office for the first time in a while, and Annie had a bit of a traumatic day to say the least. Having a conversation over the phone is not one of my strong points. Firstly because there is nowhere quiet in my office, and the only quiet places are within earshot of other people. This doesn't help much unfortunately when you're trying to talk to someone about how much pain they are in, and all the other worries. Dividing your time between someone with an ED, and other demands can be very difficult, and at times I am distracted by work "please do this asap" emails.

So when I got home on Monday night, Annie was not well. She was exhausted, and in a good deal of pain. She woke me up in the middle of the night with her somnambulism, and was not happy. This happened a couple of times during the night, and I found myself laying next to her, drifting in and out of sleep, constantly checking the bed next to me to see if she was still there. When I awoke in the morning and commented on what a rough night it had been, Annie had no knowledge of the events.

Now this has happened a couple of times before, and the arguments we've had while she's been asleep have hurt me, and left me feeling hollow the next day. There is no recollection of the argument, and thus there is no closure to the words we exchange. I'm a brooder too which doesn't help, and as we are all wont to do, I dwell on the negative words rather too much sometimes. I do treat Annie's ED as a seperate entity, but it is really very difficult at times not to take offense at the person who is using words borne of "the voice". I wish I didn't dwell on these things so much.

Talking to Annie about my feelings is a mixed blessing. As I sat at the table one night last week, and poured out random rubbish from inside my head, I couldn't help notcing the sadness in her eyes as she sat there, thinking. I didn't probe further, because, for a change, I needed to get things out. I'd been to see a counsellor earlier in the day - provided by my employer. I was later told that this counselling is often of a "quick fix" type. It was clear that this was the case, as there was little empathy from the lady who seemed to want to just get to the bottom of things. Indeed, after I had recounted the tales that you have read as part of this blog, we both just sat there in silence. Me, waiting for her to say something helpful, constructive or insightful, and her, just mulling things over quietly to finally reply with "hmm... that sounds like it must be quite difficult.". I'm not sure I'll go again. I stated from the outset what I wanted to achieve, which is a mechanism for coping with the effects of supporting someone with an ED. There was recognition that this was even possible from her point of view, and no feedback from my one hour monologue.

I do think that it takes a "skill" for wont of a better word to look after someone who has an ED (or any other type of disorder). Jumping in blind definately doesn't work. You need infinite patience, and the ability to listen and empathise. After my counselling session, I came away thinking that I had better skills at this than the person I'd just been talking to. And even I know that I need help honing these skills.

I've been thinking a good deal about intervention and control recently. How do I intervene without taking control from Annie? Can I do this? Is it possible, or is it not my job, and should intervention be best left to those with the skills?

Control is something that is difficult to understand, as it is based on the perception of the "controller" and the "controlee". As a very simple example, #1 was getting the pep talk last night about "going out". We said that if she went out, we would want to know where she was going, how she was getting there, how she was getting back, and what time she was going and coming back. These things are asked purely to make sure she is safe. Is she going to be walking alone in the dark? Is she going to be with friends? What time do we need to start to worry if we haven't heard from her? However, her perception is entirely different I'm sure. She's a teenager after all. She wants independence. She wants freedom to do as she pleases, and she doesn't want nosey parents sticking their oars into her business. Does she see it as control? Probably. Our words that say we only want her to be safe, could be construed as excuses for the real reason (in her eyes): They're watching me! This is a simple example of control, and how it can be perceived differently. it is control, because, as parents, we state that if those conditions are not met, she's not going out. Is it reasonable? I'm sure parents of teenage girls would say yes, but what about a teenage lad?

Looking at an ED is far more complex. It is borne of a feeling of a lack of control, so intervention is even more difficult, as almost anything that can be perceived by the sufferer as "control" will be. When I speak, I have to be careful that words expressing care and concern are not taken as words of control.

So I did some reading on Intervention, and discovered that, like all concepts, it's a bit more complicated than you might think, so before I start, I think I need to define what I mean by intervention.

For the purposes of this blog, I define intervention as "doing something that would interfere with the natural order of things". From turning off a tap to prevent it overflowing, to taking an axe to a set of scales. Some of the people who have read this blog have intervened by posting comments. Some have chosen not to, by just reading, then moving on to something else. Maybe they come back, maybe they don't, but they choose not to intervene for whatever reason.

And these reasons for intervention are complex. Often, intervention takes place without thinking about it. The tap gets turned off, because that stops the sink flooding, and expensive repair bills. Very straightforward. But perhaps the sink was being filled by someone else for a purpose unbeknownst to the tap-turner-offer (I really must get used to typing in some form of "person"... I don't want to use "you" because that implies I am telling you something. I hate using "one" because it's clumsy. Suggestions, as always, appreciated). That intervention then becomes less useful, because the sink still has to be filled. Am I rambling uselessly here?

OK. Get to the point Ian. Support is a form of intervention. Without support, Annie's Rexia would follow a course of action. Maybe she would get help on her own, maybe she wouldn't. Taking this a step back even further, I am actually intervening simply by being part of Annie's life. I knew that I would be doing that when I contacted her almost a year ago now. Love was the motivating force then, and it remains my guiding light of hope now.

I watch Annie and her ED, and it makes me scared. I don't want her to die. It's that simple. I want her to be happy, healthy, and making me chuckle with Hex My Ex. It is a natural urge (I think) to want to change things when you see them going wrong. Especially if you have made the same mistakes, and can offer advice and help to prevent the same mistakes being made. How many books and DVD's are there out there telling you how to do pretty much anything from lose 200lbs in 5 seconds, to building your own house.

Dragging this back to the point though, when I see Annie suffering, I want to make things better. As someone that has never suffered an ED, my mistake was to assume that simple intervention would save the day. Eating Disorder. Answer:Just eat. Fall flat at the first hurdle, do not pass go, do not collect £200.

And therein lies the problem with any intervention. If you don't know what it is your trying to help with, how can you possibly know how to help? On the face of it, eating disorders are a relatively common psychological illness. Yet there is no straightforward "cure", despite many many experts' efforts. How then, can you, as a supporter of someone with an ED, help?

Well, you can and you can't. Is that clear? Nope? Good. Now you're beginning to understand the complexities here. Understanding the issues behind Annie's ED is the key for me. I really need to be able to put myself into Annie's shoes, and that may sound easy, but an ED is a devious bastard, and all too often I am lured into thinking everything is OK, only to find out later that it's very much not. Complacency is probably my greatest enemy.

Take this blog as an example. Writing these events down has no doubt taken its toll on Annie. As I read each post, I go to see her and ask if she's OK. Mostly, we chat about what she's written, I put my arms around her, and we hold each other. Not much that has been written here is old news to me. I've heard all these stories several times, which invariably lessens the impact. The problem is that Annie is living with these things inside her head, every single day. To write them down like this is so tough for her, yet I forget sometimes how tough that can be. I need to be there to support her, and I think I am most of the time, but sometimes (when I'm at work for example, and in the middle of something) I fall down. Indeed, it was my idea that she blog this. I see myself as responsible for any ill effects of this, even though it is Annie's choice to post. Was this intervention good? Time will tell I guess, but the magic 8 ball currently says "possibly" (although it also said "yes" in response to "greqgfda gfda d dfsa?". I hope I found a good balance between intervention and control here. I planted an idea, and Annie (for the most part) has carried it through.

Getting help from Sue though had to be her choice. Again, I suggested it, but I couldn't arrange the appointment. When Annie finally did it, I cried with relief. I think Annie was a little surprised at my reaction, but these tenative first few steps are so important because they are actually steps in the right direction.

So today, I read a site that Annie has pointed out to me: Anorexia Carers. It is a great site for quick, easy to read information on how to help someone suffering with Anorexia. I will be adding it to our list of recommended links. One of the more interesting analogies on the site talks about the "gremlin" that is an ED. The sufferer is regarded as normal, but with this gremlin on their shoulder. What I partcularly liked about this description is that each step on the road to recovery is like a slap in the face to this gremlin, whose sole objective is to get rid of you (the support) so that it can work on the sufferer un-interrupted. Let me tell you, I relish every slap and kick I give (or help Annie to give) to this horrible little thing. I just wish I could steel myself against the pain it so often causes me, so I could better support Annie.


may_be said...

Ian, I've been sitting here thinking about how to respond to your post, because I really wanted to respond but my thoughts are all over the place from reading that.

Firstly I wanted to say thank you for posting, despite all the background stuff about whether you should or not, as another 'carer' I read it with this strange sense of pain, sadness (ignoring the pricking in my eyes) and understanding (been there, done that kind of feeling).

EDs make the sufferers feel so alone, but as carers we feel just as alienated as well - both from our loved ones and from being able to reach out to friends of our own. Reading your words, as hard as they were, makes me feel a little less alone.

I don't think you can be a carer without a certain amount of hypocrisy. Which may sound like a terrible thing. But we aspire, so hard, to be the rock, the support, the unchanging element in their life they can rely on. But it is tough, and so the rhetoric sometimes exceeds our ability to be such a person. I don't necessarily think thats a bad thing. Striving for an ideal and falling short is better than not trying at all.

Although I can understand that no matter how much you both talk to each other you do have fundamentally different outlooks on every situation, coloured by both your positions in relation to the disease AND just by being different people. Having said that though, I would ALWAYS rather speak than have this giant block of darkness like some heavy ball weighing down the space between my bf and I, which is how it feels when we aren't speaking about the issues.

Your question about how to intervene without taking control from Annie is particularly crucial. The well-rehearsed answer is that you can't. That the sufferer has to WANT to recover, has to want to survive, and that if you intervene to the poitn of challenging the disease head on they just shut down, because isn't that the ultimate challenge to the control they so desperately need/want? As you said, simply being there is a form of intervention. So just by staying around you are lending your strength to help Annie fight.

My bf tells me that he often forces himself to eat something 'for me'. It scares me that i have that influence on him, or that he depends on me to that extent. But its also good that I can challenge the disease even when I'm not physically there.

Now i've been ranting for ages. What I remind myself when things get tough with my bf is that every relationship has tough times, its just that this one has more, and they are more serious. Thinking like that I can remind myself that this relationship has positives too, and my promise to myself is that as long as I can remember the good times, and the memory of them and the promise of future times outweighs the present shit, then I will continue to fight for the relationship, for my bf, and against this disease.

I'm with you though Ian, I just wish it didn't hurt so goddamn much all the time.

Thank you for sharing this, it echoes a lot of what I feel and was hard going, but in some strange way reassuring to read other people experiencing the same sorts of challenges.

I hesitate to post in case I'm faning the flames in any way, I don't want to cause further dramas. Just felt like I needed to respond to this post.

Strength to you and Annie both.

Karen ^..^ said...

Ian, I think the only way to really help is to just be there. You are doing your very best. Annie knows that. She reacts off her hurt and fear, and so are you. so do all of us who have ever had to deal with this.

You are the only person in Annie's life who has ever treated her kindly, much less loved her the way you have loved her. She is as terrified of that ending as much as you are terrified of losing her.

this is a tragic situation, and one that is nearly impossible not to take certain situations personally (on both sides) but in order to preserve your own emotional well being (on both sides) It is very necessary to learn not to.

May you both find your peace. Love to you all.

Oh, and Ian? Instead of "one" which is clumsy, maybe where applicable, you can say, "either party" or "the parties"

something like that. If it works.

Mars said...

wow, that made long reading. like the others, i'm not quite sure how to respond. but the fact that you're still there and you care so much speaks volumes.

hang in there. inshallah, things will work out in the end. maybe not now, or the near future. but eventually.

Ian T - Parsnip no longer... said...

May: Thankyou so much for your words. There is a good deal of truth to what you've said, and it is so well written.

Karen: That's the thing about knowing what you need to do and actually doing it. A sufferer of an ED (especially one like Annie) knows what they need to do, but just has a very hard time doing it. I wonder if we are all like that in some way.

Mars: I know how you feel. I've forgotten how many times I've thought to myself that "I'm not sure how to respond".

thewishfulwriter said...

Ian, I can only imagine the toll this has taken on you. It's apparent how much you love Annie, and at the same time, how much loving Annie can hurt and be scary. She is truly lucky to have a partner who loves her more than he hates her disease. I believe she knows that and it's my hope that with your love and support, she fights her ED with all she has.

Karen ^..^ said...

The trick is, though, Annie has to truly come to the realization that she deserves all of this. All the support, love, companionship, all the good things in life. She has spent a lifetime with horrible people who made her feel guilty for every single little basic need. As if she didn't deserve it, even the smallest need. It will not turn around overnight. When you have been hammered over the head on a continuing basis that you are not good, that you are undeserving, that there is something fundamentally wrong with you, it is very, very difficult to accept that you ARE deserving of even the basic nutrition to keep your body nourished, that you ARE deserving of a hug, and an affectionate word, that you are deserving of all the good things many others take for granted on a daily basis. This disorder is not just the eating disorder. It is a mind/perception/ guilt disorder. It is a disorder borne of horrific abuse and neglect. It will take some time before Annie realizes, it is the abusers that were wrong, and fucked up, NOT HER. Sadly, the interim is hard to deal with.

I can relate so well to what Annie is going through, even though the ED is one symptom I never had. I had all the others, though. And Ian, I can relate so well to what you are going through as well. It is torturous. On both sides. Soon you will see that you will both emerge from this hell on the same side.

My most sincere hope that it is soon. Love to you all...

MelissaS said...

i believe that when we are in the anorexic phase of our eating disorder, we are our most self-oriented (and self-destructive, of course). i guess we have to be -- we can barely keep ourselves alive. we can't do the most fundamental thing - eat.

as anorexics, we fear that we are all alone, UNLOVEABLE and we have ugly souls. it's been my experience that we act out to make our worst fears come true -- WE PUSH PEOPLE AWAY.

so, hang in there. take the push for what it is. and take care of YOURSELF too.

Linda and her Twaddle said...

This was a hard post to read, harder than Annie's posts are actually, because Annie has history that is sad a difficult and yet still identifiable. Your grief and struggle is lonely in itself and something introduced to you as an adult, so it seems very confusing to have to process all this at a time in life where you should be having just day to day stuff problems happening.

I know Annie thinks you expect perfection, but really, is it actually Annie who expects perfection? Perfection from herself. She cannot measure up to any yardstick she holds because she has no natural self worth. She has to build her own self worth with the meagre bag of tools she took out with her in the grown up world.

And, no matter how often you tell her the truth about herself (that she is lovely, beautiful, good and kind), she will never really absorb that truth because she does not feel it within her core.

When a person is living with mental health problems, they are right in the thick of it, swimming around in emotional comings and goings that ricochet off in the head space. Drowning in it. Their reality is different to anyone elses, but it is still real, even if irrational. Plus, whilst you may feel sad about something, for a person who is depressed "sad" and any other emotions are like bombs going off in our head. Because we don't know what to do with those emotions - we only react. We cannot just allow the emotion to "be what it is", we have to make something out of it. Fix it or fight it. So, to process all that mental stuff Annie has ED, I have anal routines, exercise, food things and "ocd rules" to follow. Other people drink or take drugs.

Somehow having control of the outside world allows that person to have some sort of internal control, so maybe Annie keeps aiming for some outside level of perfection that is nigh impossible to achieve. And, even if she did achieve it, it will never be good enough because, deep down, Annie does not like Annie that much when going through a phase.

Eventually a person with depression will have to separate the emotion from the thought process - that is, if they want to get better. Step back. Don't identify yourself with the past, don't project in the future. Otherwise, all those negative thoughts become "the person".

There is not any one answer for you is there? Just a lot of stuff to consider. Maybe you should both allow "off days". No talking about ED or anything else. Sometimes talking about it becomes so blah blah blah that you wonder if that is all there is in life.

Ian T - Parsnip no longer... said...

Wishful: She does fight hard. Very hard. But that damn gremlin has a loud mouth.

Karen: "This disorder is not just the eating disorder. It is a mind/perception/ guilt disorder" These words were spot on. There is so much more than "eating" to this.

Melissa: I really don't believe "you" are your ED. I do see it as a creature that squats on your shoulder. When Annie is "in the grip" of her demons, I know that what she says is not personal. Knowing that, and feeling hurt though are two different things. I really need to work on not letting the ED get to me.

Linda: Thanks for taking the time to write a lengthy reply. I guess I deserve to read long comments after posting such a tl;dr post. Yes. Annie does expect perfection from herself. We've also had a couple of conversations about some of the points you've brought up in the past:
"I don't like myself". It's an interesting one that. It implies that we are talking about two people. One person that doesn't like another. It's a clear sign to me that the ED is very much a distinct and separate part of Annie's personality.
The other thing you brought up about thoughts inside the head. Sue mentioned that currently, all these thoughts are crammed up inside Annie's head and there is sometimes no room for happy memories. She has said that this blog may be a way to get them out of her head to free up space for new "happy" thoughts.

Thanks to everyone for taking the time to read my post, and for taking the time to comment. It really does mean a lot to us.


Linda and her Twaddle said...

Oh dear, I do apologise for my comment being so long. It is hard to guage when typing in a little box. Anyway, I just hope that both you and Annie are well.

Ian T - Parsnip no longer... said...

Cripes! Don't apologise. It really helps getting a well thought out different perspective on things.