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 anger

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.

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20 Responses to “In praise of the difficult patients”

  1. I really like this and appreciate it. For various reasons, I’m sure my doctors would term me a “difficult” patient too – though they also have never stopped believing in me and have always tried to meet me where I am. I think they would agree with your assessments here, and I wish more doctors, therapists, clinicians, etc would come around to such a view. I’m sure difficult ED patients can be frustrating as all hell, but to me that signals just how much pain and struggle we’re wrestling with, and how much help and love we need.

  2. Hi Carrie, this is really interesting – what was it that turned things around? And when you say good clinicians didn’t take any of your bullshit, how did they deal with it? You sound SO much like L and I keep telling her she is so strong, but all of that strength is used to holding on to her ED.

  3. Hey Carrie,
    This is a very well timed post for me. I too am a “difficult” patient. I have been told that I have a tendency to “eat outpatient therapists alive”… and have been given up on by more people than I can count. This all means that when I get scared, or sense my therapist might possibly be getting frustrated with me, I shut down the relationship and disconnect before they can quit on me. Just a couple of weeks ago I finally had a very honest conversation with my therapist letting her know how scared I was that at any moment she too was going to get frustrated and give up on me at any moment. She said that she understood how it would be hard to open up to someone when you thought they were going to bail and assured me that she wasn’t going anywhere. I’m not sure if I’m convinced…
    I also hate the “We don’t know how to help you, we don’t know why you’re still struggling” lectures. I’ve never found them helpful, and usually end up shutting down and hiding in the eating disorder even more.
    Thanks for the reminder that stubbornness can be used for good as well as evil!

    “The difference between perseverance and obstinacy is that one comes from a strong will and the other from a strong won’t”

  4. Yes to all of this.
    Right now my new reignited motivation for recovery is that I don’t want to be a chronic patient anymore. I don’t want to be the difficult case that they throw up their hands on and say, “We’ve done what we can.” I want to prove those people wrong, along with proving to myself that I can drop the fear and drop the lack of trust in the process instead of dropping the ball on doing the work. The work sucks, let’s be honest, which is why it’s so much easier to stay with the comfortable discomfort of the disorder.

    But when others give up on us, it seems to validate our (inaccurate) perception that what we’re doing is fine, that if they don’t care, we shouldn’t either. Great post.

  5. This made me cry and cry. And hope.

  6. I also found hope here. I was a difficult patient too.. and I used to put so much thought and problem solving skills into coming up with ways to beat what was to me, then, just terrifying and intolerable. I had a nurse say to me once, imagine what I could achieve if I’d applied those problem solving skills and that thought and effort to something worthwhile. and it did make me stop and think and realise that it was an asset I was using in the wrong way. So I really appreciate the hope you have given readers with this post.
    I also think, that despite being such a frustrating patient, in a way I taught them a lot. I did tell the nurses all my tricks later in my admissions so that others could get the help they needed rather than get away with them (I know, I might be a ‘traitor’ but seriously, those things wasted so many years of my life!) but beyond that, I think they learnt from me, what NOT to do. I have hope that they will not repeat those mistakes with future patients.

  7. me too.i do believe with each patient going through, they learn to tweak things for the next one,next set of men and women who pass through. some will,though,will paint ed patients under the same brush and paint future and repeat ones with the same “stroke” and “colour” thats where i see it is not fair. now i am struggling , trying to manage .two docs from two facilities are urging me to enter their program to “buy some time” to add a few more years to “live”,BUT am scared , hopeless” that i will come out with any knew knowledge if i encounter the same attitude from the ED team. i just hope through time that we all continue to learn and accept.

    • One of the hardest things for me has been that they never, ever took the label of ‘difficult, non-compliant, and not to be trusted’ off me. And even ‘uncontrollable.’. One of the reasons I will never go back to hospital again, at least THAT hospital which is my only choice at the moment, is because even years later and having not behaved that way for a long time, I am immediately put into a locked HDU and kept there for the entire duration of my admission and last time I was looking like I was needing hospitalisation was told I would be put straight on the really cruel program they had me on the previous times (including 2 point restraints) without any chance of showing them where I was at or that I wasn’t going to behave the way that got me in that situation (and hadn’t behaved that way for several years but they had still kept doing it). I can’t seem to get away from being a ‘bad’ person in their eyes, which my ed loves, but it doesn’t actually help me in any way. I wish they would learn from me, not just for future patients (which they have) but for me, too.

  8. During my in-patient treatment, I was so brain-dead from 25 years of chronic malnutrition that I couldn’t be difficult if I tried. And when I started to turn around and be a participant in my recovery, I have to confess that I hated every difficult patient in that facility and in every facility I was ever in. But…a big part of my eating disorder is my belief that nobody sees me, a belief that let me get away with blatant restricting behaviors in an attempt to get loved ones to really see me and hear me. The difficult patients were the squeaky wheel, and I fell through the cracks. Wish I could have been more difficult.

  9. I want to raise the issue of the non-difficult patient. The compliant patient, the ‘easy’ patient, the ‘perfect’ patient. When I was in treatment, I was one of those. It’s always been easy for me to perform, to be what others want me to be. School, parents, etc etc. Eventually I was obedient to the eating disorder. Did it ‘perfectly’, fulfilled all its commands. And in treatment…well, the doctors replaced the eating disorder which replaced my parents which replaced school which all amounted to one and the same thing: in apparent recovery, I was still at the very bottom of the abyss, playing out my desperate need to not-be-myself. So I was the perfect patient, I got out, went back in again, got out, and again, back in…and now I am out and alone and wish that I could have had the courage to be the difficult patient, because at least the difficult ones are ‘real’.

    • I have always thought that many of the ‘compliant, good’ patients are actually in a worse position, because they are often pretending it’s all fine, or they are swapping the ed behaviour for a time, over to obsessing about being the ‘best recovered person’, whatever it is, they are not usually talking about what’s really going on for them. There are some who are at a place where they are ready to go well, I’m not really meaning them, they have usually been through a huge battle to get there – I mean the people who just turn things around straight off, are perfect angels in treatment… I’ve never met a single one who went home and stayed well, unfortunately :(

    • My heart goes out to you, ef… I hope you get the help you need. don’t give up.

      • Thank you Fiona, I really appreciate your words and well-wishes! What’s sad is that feeling of internal suspicion…I don’t know if anyone else will recognize this…that feeling of no longer knowing, even on a private level, if one’s intentions are true.

        • I’m sorry you know that feeling too… I do, very well… I’ve often thought the person I could trust LEAST was actually myself (when in reality it’s my ed, but it felt like myself) and that is a scary feeling :(

        • I just wanted to add that in treatment, I was also the “good” patient who ate everything every meal, looked forward to the food, contributed to discussions, etc. I was very complaint because I had no choice and was paying for that treatment myself. I was actually relieve that I didn’t “have” the choice to rebel because I was being watched so closely.

          It’s when I’m out on my own that I start to slip back and get “difficult.” When given the choice to revert back to behaviors that keep me stuck, I usually do, as those are my mechanisms for coping. So in essence, I am both compliant and difficult. Go figure.

  10. I don’t remember having ever commented on a website, but that was dead on!

  11. This is also amazing! (coming from a difficult patient)

  12. You are incredible. Thank you for writing this. There are so many people I wish I could show this to.

  13. Aaaaand I just read this a second time. I wish more people could read this, and I wish someone could have given this to me to read ten years ago! There are a list of clinicians and physicians who I would love to share this with. =)

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