What "life-threatening" can't capture

I've been busy with life these past few days, but I've still been thinking about things. What I've been mulling over recently is the idea of eating disorders being "life-threatening." Which they are, but saying "life threatening" doesn't explain the full force of suffering caused by an eating disorder.

Many people with eating disorders suffer with symptoms that aren't immediately life threatening. Their symptoms might be turning their bones into bubble wrap or slowly rendering their digestive system useless. These things can become life-threatening. But mostly we ignore them.

By "we," I mean, of course, the ED sufferer who generally never feels sick enough to even warrant a diagnosis let alone the understanding that their disorder is slowly killing them. I also mean the "we" in the medical community who kicks you out of the hospital the second your potassium levels are no longer in the basement or won't even admit you unless you are in danger of dying within the next 24 hours. Also the "we" in well-meaning but clueless loved ones, who think that you're all better because your head is no longer permanently in the toilet or your bones are covered in a thin veneer of flesh.

I know that, for me, I can generally handle a serious crisis with (relative) calm. But as the crisis drags out, we become inured to it. We get used to it. We adapt. So all of a sudden, it doesn't seem like much of a crisis. We can't live in constant crisis mode. So we adapt. I think that's some of what happens with eating disorders. I've told myself (and, for that matter, my treatment team) that I can't be that sick because I still weigh X pounds more than I did at my worst. Never mind that I'm crashing harder and purging more and my body is no longer as tolerant of such things. But all of these behaviors become normal and when I would get shocked gasps and stares when I mentioned all of what I was doing, I was baffled. I had a job, I was in grad school, I was just bloody fine.

Then there were the times that the symptoms and suffering caused by the ED were relatively constant but not putting me in immediate physical or psychological danger. It's the kind of suffering that slowly wears you out, body and soul. The kind of suffering where you structure your entire life around your disorder such that you have no hobbies, no friends, nothing. Just Carrie and the ED, sitting in a tree, K-I-S-S-I-N-G. The kind where your weight was just normal enough that you weren't passing out regularly and your periods came mostly, and you would get complimented on your appearance all the damn time but you honestly didn't care. You hated yourself, your body, your life. You didn't understand how people didn't run away from you without screaming in fear and disgust.

So how do you measure this kind of suffering? Can you even measure it?

I've looked at the quality of life scales and you fill out the questions and get your number and plug it into your data set. They're clean, simple, easily analyzed. So clean and simple that it's easy to become disconnected from what the numbers really mean. We can say that eating disorders have a negative impact on quality of life, and it is important to say that. But that's just the starting point.

I think it was Stalin who said, "One death is a tragedy. One thousand deaths is a statistic."

I'm a data nerd. I love statistics and numbers. But it's also very easy to gloss over what those statistics really mean. We can talk of how many people die of eating disorders, but that doesn't even begin to calculate the total suffering caused by the disease. That doesn't account for the relationships lost, families torn apart, and general physical and mental hell.

It's a sobering reminder, really.

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L.C said...

This is my life right now
"relationships lost, families torn apart, and general physical and mental hell."



hm said...

My therapist says families become "self-norming." That is, the more you are around something, the more normal it seems, to the point that you literally cannot see that something is a problem. Individuals are self-norming too. This is very true with eds. They chip away at life- sometimes with a massive sledgehammer, and sometimes just with a steady little icepick, so slow and steady that you don't notice the damage until it's too late.

Anonymous said...

how about responding to the very well-thought out comments from your last post?

extralongtail said...

Thanks Carrie; yes I agree. You write:

"Then there were the times that the symptoms and suffering caused by the ED were relatively constant but not putting me in immediate physical or psychological danger."

I was in this state from my mid-20s to my mid-30s. I had relapsed in my early 20s, but had hit a very low but constant weight. I got used to feeling cold, tired and grumpy. I got used to the 'anorexic voice' and felt it was part of me. Sadly, no GP even considered weighing me when I visited the surgery regularly with infections and exhaustion.

Then I got really sick and my weight plummeted to a new low that was incompatible with life. No-one should ever get to that state; but sadly they do.

Abby said...

As always, you pull my head out of my ass and remind me that my "normal" is really anything but. Thank you for this post. That doesn't make it easier to make the changes, but it does shake up my secure little thought bubble for now...

JS said...
This comment has been removed by the author.
JS said...

a lot of what you said was exactly what I was trying to convey re: life diminishing being a more substantial measure of the impact of eating disorders. it's harder to measure, it's a less tintillating way to capture the attn of others, but I think it's much more real and ultimately more meaningful. 

I'd be really interested to know what you think re: the rest of my comment (and those of others) questioning why you chose the 1:20 statistic from a singular paper. Why not do a meta analysis (or draw on data from one that's already completed?)

And what do you think of the other ways to measure quality life-- lately w all the buzz around women scientists and women not being able to have it all they've mentioned how much less likely women professionals are to have children or be married, and this is used as a proxy for life quality/balance. When people talk about the cost of depression, they talk about days of work missed or time otherwise made unproductive by the disease.

To me, this is more salient  than talking about death-- most people with eating disorders won't die of the disorder in any immediate sense, and death is an abstract concept especially to one in the throes of the disease. You might consider looking at the anti smoking campaigns of late-- they've taken to talking about what changes today if you quit and what changes today if you don't when you are considering what messages would be more effective than saying life threatening.

I think you have a responsibility, if you are going to identify yourself as a science writer, to use all the knowledge you have of statistics and critical dissection of published work to present the most true and clear picture of this.

Anonymous said...

You come over as obnoxious JM. Who gives a damn that you're training to be a doctor. Get over yourself. The fact that you even felt the need to state that here in another post is just bad.

JS said...

Hi there anon-- sorry you find me so offensive. I shared my background so that CA could know where I was coming from and have a context for my concerns. I'm glad that she's addressing it so dilligently and am unsure why you're so bothered, as it wasn't my intent to either impress or upset anonymous Internet users. I obviously care about this topic and find it worthwhile or I wouldn't have wasted time reading or making suggestions.


Anonymous said...

For what it's worth, I didn't think JS came across as obnoxious. I really liked hearing what she pointed out. Important to consider and articulated very well.

am said...

"We can talk of how many people die of eating disorders, but that doesn't even begin to calculate the total suffering caused by the disease. That doesn't account for the relationships lost, families torn apart, and general physical and mental hell."

I needed to read everything you wrote on this post. Thank you so much!

Although I've been free from active bulimia and anorexia and alcoholism for 25 years as a member of Overeaters Anonymous and AA, there are very few recovering anorexics or bulimics who attend OA meetings in the the small town in which I live.

Reading the blogs of those from all over the world who want freedom from eating disorders has helped me as a member of Overeaters Anonymous. Overeaters Anonymous doesn't work for everyone, but it saved my life.

I'm adding your blog to my reading list of ED blogs.

My blog isn't specifically about eating disorders but I have posted some of my story about how I suffered from eating disorders for my entire life until I was 37 years old and how I then found freedom from bulimia and anorexia. I am 62 years old now and feeling immense gratitude for the community of bloggers who share their stories.

sb said...

I was just sort of saying this to my therapist in an email I sent her tonight - I've been dealing with this for all of my adult life and most of my childhood before that, and I had said something in session that seemed to surprise her...which reminded me that though I've been seeing her for awhile and part of what I find helpful about therapy is having someone to recall the darkest parts of this to (things I've done I'm ashamed of, the ways it seeps into the cracks of your life in the most degrading, unrelenting way...), I've not really even scratched the surface. I was saying that no one, upon meeting me or another sufferer, could possibly imagine the insanity, the lengths people go to. It sort of stuns me, when I step back and look at it.
Thanks for this well articulated post.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


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