In praise of the difficult patients
When I was being treated for my eating disorder, I was a pain in the ass. I say this not with shame and loathing or as a badge of pride. I was a pain; that’s pretty much a fact. I lied, I cheated, I stayed silent when I should have talked and talked when I needed to zip the lip. I was arrogant and condescending. I was convinced I could do recovery my way, I thought eating was an afterthought to recovery, I had a nasty attitude and, not infrequently, a blatant death wish.
Like I said, I was a pain in the ass.
Looking back, I feel bad for many of my treatment providers. I was terrified of everything and I wavered from being more scared of my illness to more scared of not having an eating disorder on a moment to moment basis. They were caught in the crossfire of what was a very internal war. The good clinicians didn’t take it personally and they also didn’t put up with my bullshit. The others either got nasty back, which sparked a very real desire to out maneuver them that mostly succeeded or I intimidated them so badly that they basically let me do whatever I wanted. ED 1, Carrie 0.
I was never an easy patient, and I never claimed to be. That being said, if you want easy patients, you probably shouldn’t be working in the field of eating disorders.
Throughout my many treatment experiences, I met lots of other people who could be classified as “difficult patients.” In fact, I know of very few eating disorder sufferers who aren’t difficult patients. Our ways of raising hell, however, varied dramatically from person to person. Some of the girls and women I was in treatment with were overtly difficult. They fussed, they yelled, they threw tantrums. They loudly told staff to sod off. They flat-out refused food. It was easy to write them off as mere Drama Queens, although some of them certainly were. Like me, they were scared.
My ways of being difficult were a little more covert. If I was overwhelmed at a meal, I shoved food in my sock rather than say anything. If I thought a group was stupid, I would generally read in the corner or just mentally check out. I would tell you what you wanted to hear and then go do what I damn well pleased. My antics got noticed less, but I generally was on the receiving end of the barrage of questions of “We don’t know how to help you, we don’t know why you’re still struggling, why don’t you talk to us about what’s bothering you?” And I sat on the sofa and just shut down. I stared with a blank face and nearly wore out my shoulders shrugging off their questions.
In either case, many treatment providers got frustrated and gave up. We weren’t worth the effort. They couldn’t help and they were embarrassed or ashamed or simply flabbergasted that all of their advanced degrees didn’t give them the insights to crack our skulls and actually help. They didn’t want to deal with patients who would yell and hit and phone at midnight from the ER for pulling yet another ridiculous stunt.
They gave up on us.
And then we gave up on ourselves.
What so many of these clinicians never stuck around to find out was that when we were clinging desperately to our eating disorders
out of fear
or pure mule-headed stubbornness…
…when we clung against all odds and sense of sanity, they never knew that we would one day hold on to our recoveries just as fiercely.
I’m not always gung-ho, recovery is awesome! Often recovery isn’t awesome and life sucks. Expecting that a person is always 100% super-duper recovery motivated is silly.
But the strength to which we hold on to our disorders–against all semblance of a normal life, even when it bankrupts ourselves and our families, even when we know we might die if we don’t let go–is an asset. You just need to get that asset moving in the right direction.
Personality traits, like the ability to be a pain in the ass, are generally neutral. They are what they are. It’s how we use them that matters. Being a manipulative narcissist might not win you a whole lot of friends, but it can make you an effective politician or CEO. Fear at leaving an eating disorder can be slowly transformed into a fear of going back. A stubborn refusal to try anything new can leave you stuck in anorexia for over a decade OR it can mean your recovery habits will one day grow just as strong.
Too many of my friends have been written off as treatment failures for being difficult. No doubt they were. I’m not denying that working with ED sufferers is often thankless, wicked hard work. But when people can begin to see the double-sided nature of our pain in the ass ways, we can begin to move on from our disorders. Often we aren’t trying to be difficult (well, okay, there were plenty of times when I was trying to be difficult), but we’re confused and scared and stuck and angry. Who wouldn’t be difficult in those situations? Being a difficult patient to treat isn’t a reason to give up on people. All too often it is.
Yes, I was a difficult patient. Yes, I was told I was chronic and beyond help. Yes, with a lot of hard work and help from people who weren’t intimidated by my difficult case, I eventually began to get better. Difficult doesn’t mean hopeless.