Thursday, October 23, 2008

We STILL don't get it

I was saddened to read today of a woman in York, England, who died of complications from anorexia. Carole Patrick had struggled with anorexia for 30 years, according to this article. Chronic malnutrition led to osteoporosis, which led to a fall that broke her hip and made it impossible for her to recover when complications developed.

But I was shocked to read this line, buried in the article:

York Coroner Donald Coverdale, recording a verdict of death by misadventure, said her death was the “unfortunate and unintended consequence of a medical condition arguably under her control."

You would think medical people, at least, would understand that anorexia is not a choice. Anyone who's ever watched someone they love suffer with an eating disorder understands this basic fact; why can't the medical profession get it?

A few paragraphs down, a spokeswoman for BEAT, a UK-based organization supporting people with eating disorders, had this to say about anorexia:

. . . disorders such as anorexia were not a “diet gone wrong” or a fad or a fashion. “They are a way of coping with difficult thoughts, emotions or experiences,” she said.

In some ways, this shocked me even more. This is the old psychodynamic perspective on eating disorders, one that has been in vogue for 50+ years. Only thing is, there's absolutely no evidence that it's true.

The latest research points to genetics and heritability as primary factors in eating disorders. EDs run in families. They're associated with clinical levels of anxiety. Many people have difficult thoughts, emotions, and experiences; very few of them develop eating disorders.

I don't expect most people to understand anorexia; we have a lot of educating to do. But I do expect medical people and organizations like BEAT to know better--or to stop speaking for all those with eating disorders.

13 comments:

marcella said...

While one has to remember that the press, particularly perhaps British local papers, can quote people out of context, this was indeed a shocking article about a very sad case.

At least the coroner is quoted as saying the disease was "arguably" - ie it may or may not have been under her control. Presumably this was what meant that he could reach the conclusion of "misadventure", one of the possible options given to him which would include murder or manslaughter (hardly, all those around her seem to have tried so hard to help her), neglect (presumably the verdict her GP was dreading, since he would have been the one to carry the can for that in an adult who was in treatment) or natural causes (it's NOT natural to starve oneself to death).

Deaths from eating disorders very rarely used to be ascribed to the diseases themselves. Death certificates just didn't mention them. They often still don't. At least this coroner hasn't covered up the real cause of his patient's death, he has broadcast it publicly.

I think that that is why BEAT are concentrating on the seriousness of eating disorders at the moment. Their current fund and awareness campaign revolves around a young woman who died last year and whose parents want to use their story to raise awareness. NO, it's not a hopeful message. It's shock tactics which might backfire. But in a society where doctors still fail to take eating disorders seriously, where respectable medics can still advise sufferers to "sort yourself out before I give you another blood test", where anorexia is still seen as a silly phase of silly rich girls whose parents need to tell them to get a grip, such shock tactics are necessary.

Perhaps what should have been put on poor Carole's certificate was death by neglect by society and system, but that would raise the spectre of what her parents and family could have done.

I was struck by her mother's comments. This elderly bereaved lady has given the most understanding, sensible quotes. In particular she says “I don’t think they realise what an awful thing it is. It’s an illness.”

The poor woman was given little guidance (with an adult child she still wouldn't be although things have got a little better). Carole had been given the responsibility of overcoming the illness "she tried to get better. She tried really hard, but she couldn't overcome it". This is what happens in nearly all treatment for adults in nearly all systems I've come across. It doesn't work very well for many. It didn't work at all for Carole but it's too late to try anything different in this case.

I agree, the BEAT statement SHOULD have included the biological basis of the illness. I agree the statement COULD also have included a little more hope about future treatments. However, this article was about Carole. It would NOT be the place to "helpfully" suggest that if her parents had done the right thing 20 years ago she'd be fine now. As her mother says, more research is needed. Better treatments are needed. But they will be too late for Carole. She is at rest now.

Harriet said...

Marcella,
I am absolutely NOT blaming the mother or saying she should have done X or Y 20 years ago. I am all too aware, as you know, of the poor state of ED treatment here and on your side of the pond.

I suppose when I look at the coroner's statement from your perspective I agree with you--but it's still holding the medical profession to a pretty low standard here.

BEAT, on the other, I do not understand. Their spokeswoman could easily have put a different spin on the illness without blaming Carole's mother or Caroler herself. I know that BEAT has done some wonderful work--I siet on a committee of the AED with Susan Ringwood. All the more reason to get the correct perspective out there.

mary said...

It really pisses me off medicine is still "pretending" it's up to the person to choose to be well with this disease. I too have high expectations of them. Some parents and the world may still think of this as a vanity or disease of choice but the treatment places ought to be up to par on this by now. I know many mom's who I haven't been able to reach on this particular point though they are wonderful people. They just can't stop seeing it as a choice being made. They want so much for their intelligent children to choose the right way.
This is such a difficult subject because it involves our freedom to decide for ourselves, something I never want to lose. Yet, it's this very type of mental illness that steals that freedom. Good treatment unties the knots and gives back the freedom to the person who can learn to make choices that will keep them safe. If only a mental disorder were so simple, and thoughts weren't such a large part of the process of this disease.Why is it they think it's ok so long as we aren't hurting anyone else? Don't we matter as individuals?
We are learning so much about bone loss, especially in the later years, and it can be at any size. Did they check to see if Carole's hip broke before she fell, causing the fall? It may be.
It's so sad to lose anyone so young. May we learn from this and make sure we steal the ED's freedom to wreak havoc.

Harriet said...

Exactly, Mary. I'm working on my book this morning, as it happens, and was writing about this very issue as you were posting your comment. If I had to name one thing I want people to understand about anorexia, this would be it. So I'll take this opportunity to say it again:

EATING DISORDERS ARE NOT CHOICES.

Leslie said...

Like you, I bristle when I hear it suggested that eating disorders are a coping mechanism. And the message comes not just from the unenlightened. Duke U.'s program seems to promote that perspective, for example, and I know that they are a generally family-friendly resource.

How do we counter such a pervasive message?

Harriet said...

Good question, Leslie. I like to promote the research being done on genetics and biology--the more we know about eating disorders the less misinformation can take hold. I hope.

mary said...

Just keep going Harriet and others! We aren't going to save the world but the change is coming. I honestly believe that it's been parents who've been the catalyst for the home based feeding growing as a first approach in addressing ED's. More will follow. I'm still confused why PROOF is necessary to begin treating this as if nutrition isn't essential to the health of the brain, therefore a huge part of why the thoughts become distorted. Do the research but trust the results from those who've begun to heal with food as their medicine. Deal with any other issues that may be related in some way but food is like air and water...it's essential. Don't they teach them this in Doctor school?
My own part seems so small compared to you professionals. Know that you are speaking for all of us who support this when you write.
thanks

Niika said...

I'm sorry, but having experienced an eating disorder myself, I KNOW that eating disorders are types of coping mechanisms for a lot of people. I know there's also a lot more to eating disorders than just it being a coping mechanism, or whatever, but there are many people who do use it for that purpose (maybe not intentionally, but it can have that effect for them nonetheless).

Harriet said...

I have no doubt that an eating disorder becomes a coping mechanism, but I do not believe that they begin that way, or that this is their primary characteristic. I've had panic disorder for a long time, and that, too, became a coping mechanism for me in certain ways. But the illness is not psychological--that is, it doesn't start as a coping mechanism. It's just that it becomes intertwined with one's identity, much the way eating disorders do.

This matters only because it determines how such disorders are treated. And stigmatized.

marcella said...

I have written to BEAT asking them to include the biological nature of the illness in future statements and the hope already available from early intervention. Anyone else can do so too at media@b-eat.co.uk.

However I do think that in this short article which had, of necessity, to give most weight to the legal quotes from the doctors involved (who, I feel, inadequate though the legal framework might be, have actually made a much better job of summing up what happened than many would) and to the woman's poor mother, perhaps NO ONE was quoted in full.

There IS terrible stigma around eating disorders. One only has to look at some of the comments on the article itself, and this is a write up of a case where the poor woman DIED for ^%$s sake. At least here both BEAT and the medics treated the case with sympathy and respect.

Niika said...

Well, even if an ED -is- a coping mechanism, the real question becomes: What are they coping with that they need something as destructive and awful as an ED to get through a day? In a lot of cases, the answer can be biologically based, I admit.

I had depression and anxiety, not to mention self-destructive tendencies, long before I developed a clinically diagnosable ED, and I have no doubt that their presences were a large part of the reason why I developed ED in the first place. I had too many emotions, and they were too intense, and I felt awful about myself... and then for whatever reason I decided losing weight would be a great use of my time, but I was too impatient to do it "right" and so just ate very little food. Later on, once I realized the emotional blunting and controlling effects of the ED, I did not want to stop. My self-hatred just made me want to do it more. And so it cycled downward until I finally started to get proper treatment. Which isn't to say I don't still struggle with it (and depression and anxiety as well), but it is not completely life-interfering the way it used to be.

Proud FA said...

My blog partner is the world's foremost authority in ED.

Harriet said...

And who's that?