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.