For me, therapy is not about making meaning out of my mental illness- I didn't even go there with the intention of discussing that part of me. It's about finding healthier ways to manage my life, my emotions, my thoughts, my habits. The ED came up as a result of discussing those things, and for a long time I refused to believe my therapist that I even had it. (You were instrumental in helping me see the truth of that.)

A disease of the body makes you physically sicker and sicker, but doesn't necessarily change your thought and behavior patterns- but an ED, although it is also a disease, not only makes you sick but also shapes your thoughts, your behaviors, your obsessions, your urges. Sometimes for years and years and years till you don't know where the ED ends and you begin.

It sucks that a disease of the mind gets so tangled up with our psyche that it does need to be managed on more than one front- but for now I don't think there's any way around it.

Meanwhile, there are some pills that not only relieve anxiety but also increase the appetite- I guess that's a start.

Gives a whole new meaning to those "Better Living Through Chemistry" commercials, eh?

I don't know where I would be without my Ativan.

When it boils down to it, EVERYTHING our brains and minds do is biological. 'Normal' function (whatever that means..) is biologically based. The fact that some people tend to be happier, and/or to enjoy food, physical activity, or whatever... has a biological basis.

When I first became aware of the neurobiological research relating to AN I was relieved. This was because I had spent many years (with AN) trying to explain to others that I was not just a 'brat' who refused to eat more than a certain amount and had obsessive behaviours 'for fun'. My AN was underpinned by FEAR. But despite having all the neurobiological characteristics that increases an individual's vulnerability to developing AN, my anorexic behaviours were triggered by bullying and abuse. The fact that I have a biological pre-disposition is largely irrelevant.

To recover from (or at least manage) mental illness it is often necessary for someone else to take charge. Initially, other people took charge of me and later I took back charge of myself. I recovered from AN by gaining weight (absolutely essential), maintaining my weight and having A LOT of therapy to help me to learn alternative ways of coping with life. And an important aspect of my therapy related to being viewed as a person in my own right by my psychiatrist, and not just as an illness.

And on the issue of medication... I'm totally against it's use in EDs. Medication always has side effects - and I know of some people with EDs who are so highly medicated that they have tics (that weren't there pre-ED), physical side effects of long term use of medication such as heart abnormalities, liver and renal problems. Furthermore, clinical trials of many psychiatric medications produce different results depending upon whether they're conducted by a pharmaceutical company or an independent research team. I'm not suggesting a conspiracy but we live in an overmedicated society. The only drug that works in AN is food!

If I sound like I'm having a rant, it's certainly not directed at you, Carrie. I think you and your blog are fantastic. What I dislike is the increasing move towards viewing all mental illnesses as brain phenomena (aka 'messed up brain') that needs treating with pills. Many of us with a history of ED would have functioned completely differently had we not been exposed to interpersonal and/or environmental stressors. Walter Kaye has suggested that many of the traits of individuals with EDs are positive. Unfortunately we worry too much and easily get stuck in repetitive behaviours.

Allow me to clarify my comment which you posted.

For some, it appears, having a "medical" condition may take away their locus of control. Meaning, shift the potential for impacting their situation from them, to the medical "fixers". This is common, for instance with diabetics. For some diabetics, or as we more appropriately say, individuals with diabetes. The medical diagnosis can be so overwhelming for some, that they feel powerless to change.

For some dealing with eating disorders, I believe the same could be said. I don't support this, I'm simply observing it.

Lori Lieberman, RD, CDE, MPH, LDN

Cathy,

I do hear you about the over-medication issue. It's sad.

ED-wise, medication hasn't done anything for me. It has helped with pre-existing anxiety and depression. Meds have got me to the point where I can go to therapy and actually do the work. I think we are far too quick to give meds for mental conditions. This isn't to say that I'm anti-med, because I'm not.

HikerRD,

Thank you for clarifying.

But I'm still not exactly sure I understand you. When you say that having a medical condition can take away locus of control, what exactly do you mean? I'm not sure I'm entirely clear.

If I think I'm understanding you correctly, then yes, I would say that some people do experience that. But that's not a problem with the medical diagnosis, that's a problem with the appalling state of science education in this country. It's a hard thing to try and deal with--balancing the seriousness of a diagnosis with what you can do to change.

I actually agree with the comment - I don't like to externalise my ED as I do feel that it allows me to relinquish responsibilty for my actions.
(I was going to say I'm not as far down the path of recovery as you, but honestly, I'm not even on the path yet - so perhaps this view will change with time)
But at this point I can't help but see this as my fault. I *need* to be responsible for this problem, I can't say it's something I can't control - to me this feels like giving up.
I don't disagree with the genetic element of the disease, but I have to 'blame' myself in order to feel some control over it. Like HikerRD is saying (I think) it's just the way some people see it - it doesn't make it *right*, it's just what's helping me at the moment.

I think you've got it! : )

I'd disagree with HikerRD on a purely personal level, although I can understand how some people might react differently. Learning about the biology of eating disorders had completely the opposite effect on me. I started to view EDs as an illness rather than a set of behaviours that I valued or wanted in my life, and that made me want to rebel against them and wrest back the control over my life that they had stolen from me. It was only when I first considered my eating disorder as an illness that I found the motivation to fight it. So in that sense, biology gave me back the ability to take responsibility for my health. I don't think that anyone could feel disempowered by the biological approach to eating disorders if it were explained to them properly, it's a powerful idea for recovery.

The more I have talked about my ED and autoimmune disease throughout therapy the more I see many similarities between the two. If Lupus has a biological basis to it then I don't see how they are all that dissimilar in the sense that knowing an ED has a biological basis does not relieve the sufferer from any responsibility, neither does being diagnosed with Lupus relieve the sufferer from any responsibility in trying all the meds and still continuing to take care of their body despite their body letting them down so badly. Hm, you said that having a disease of the body makes you physically sicker but doesn't necessarily change your thought and behaviour patterns? In my experience it does. Autoimmune diseases are primarily diseases of the body and being diagnosed with one turned my world upside down. Ask a cancer sufferer how they "feel" about their illness and if they view the world differently since having cancer, even if they are cured. I am not the same person I was before I was diagnosed with my autoimmune diseases and I am not the same person I was before having anorexia.

I want to say so much more but I feel I am going to take over your comments section Carrie, so apologies for the far too long post. It's just this has really struck a huge chord with me and I really wanted to comment: it is something often on my mind. Thanks for reading and take care

Lets keep in mind, however, that HikerRD was simply making an observation and not stating a personal opinion. It seems to me that different people have different ways of reacting to being diagnosed with an eating disorder. And maybe this is to do with education and understanding of eating disorders, but that's not the point she was making - merely that some people feel disempowered and frightened by the diagnosis.
And while we're having such a wonderfully spirited debate, I agree with Cathy(UK) on meds :)

I have just logged in today and read both your part 1 and part 2 post in one go. I have been following your blog for a while now but this has really struck a chord with me. Not only have I suffered from Anorexia for just under 6 years but I also have three incurable autoimmune conditions (one of which you may have heard of- Lupus). I think my post might be a little too long, as I keep getting an error message, so I am posting this in two parts.

Firstly HikerRD, you commented on a patients locus of control in illnesses and Carrie I think you said that in terms of health systems this is what makes patients feel out of control? (Sorry if I misquote here, I am typing from memory of reading the comments)...well, I and a lot of other autoimmune patients I know feel a loss of control not because of the health care we do or don't receive but because our condition is incurable. It doesn't matter what meds we take sometimes, our bodies continue to turn against us. The immune system that is supposed to fight the unhealthy cells in our body also fight our healthy cells. And sometimes despite meds we can do nothing but watch our own bodies shut down on us. In addition I also know autoimmune sufferers who get to the stage, much like with eating disorders, where they refuse meds, deny their condition and "give in" to the illness. Autoimmune sufferers can view and treat their bodies much as eating disordered sufferers do.

interesting, I could go both ways on this. on a personal level understanding the biological basis of the illness gave me justifications to stay sick, at first. not that it made a lot of logical sense, but what rationalisation does - my line on it was that I was very underweight, I'd been underweight all my life so obviously my cognition was messed up, I was predisposed to the ED whenever I was physically compromised, etc. I used that to surmise that I was basically stuck in a catch 22 where I would never recover without weight restoration but I was too entrenched to do it myself, and since my parents weren't very involved and I live in the UK so treatment is very much crisis management, I didn't think that would ever happen. I knew my consent in some form or other would be needed for full recovery (esp after I was hospitalised under threat of section and discovered that at the 'magic' bmi of 15 they couldn't use coercion anymore), and figured I would always be too afraid to give that consent. it justified my irrational fears by giving them a 'medical' basis, if that makes sense (I'm emaciated so it's natural for me to be mortally terrified of eating/normal weight etc etc kind of argument)
soo, biology not so helpful for me at first. however it DID help when I started to realise that I could act independently of those compulsions (I refed myself as an OP) because I could see a 'reason' for my irrational fears while simultaneously realising that they were irrational and didn't control me.
basically, I think it depends entirely on mindset and how you interpret the information ;)

Such great posts and interesting dialogue- what I like most is that people are showing how their personal viewpoints help them to get better. Anon, thanks for the reminder that diseases of the body can also change a person's thoughts and behaviors- my sister has cancer, and after being diagnosed, she went through some major changes as well.

I guess what's different for me is that I was never diagnosed with an ED- I had one my whole life but assumed all my thoughts and behaviors were "normal" for me and just part of my personality, thus I practiced and repracticed those thought and behavior patterns for decades, digging the grooves in my psyche deeper and deeper. Now that I have been diagnosed, I have the overwhelming process of trying to untangle myself from those patterns, and right now I still cannot tell very well what is me and what is the ED. It DOES help me as well to see it as an illness- that helps to depersonalize some of these things that I thought were just me and unfixable. It also FRIGHTENS me to see it as an illness, because I do not know how much more of myself I will discover that isn't really me, and how much of myself I will lose as I attempt to recover. Seeing the ED as an illness both empowers me with knowledge and cripples me with anxiety. But it is what it is- knowing that I have a true disorder/disease is just fact- and in the end, facing the truth is the healthiest option, even when it is anxiety-producing.

Interesting to hear all the auto immune disease references! I too have one, MS, and also see patients with MS. While there's no cure, what we do can and does make a difference in how we feel and, while not yet documented, to our disease process, even though we didn't cause it.

I certainly didn't intend to oversimplify when I made my original comment. I think it's clear to all of us that eating disorders, and the people who struggle with them, are incredibly varied. And how we react to the biological label may even change over the course of treatment.