Why is “Treatment Resistant” a Thing?

17. January 2016 Uncategorized 12
Why is “Treatment Resistant” a Thing?

I wanted to write about the term “treatment resistant” since I’ve heard it so much and have had it applied to me for various things and at various times. But when I went to read about it, I was surprised by what I found.

Firstly, most of the time when it was used about me, it was being used in inappropriate ways by people who apparently didn’t know what the term actually means or refers to (big shocker there). As I went on to live life and meet many other people who have been labeled as such, I realized that it’s misused more often than it’s used correctly. Also not a huge shocker but both maddening and sad at the same time.

I was first labeled “treatment resistant” in my 20’s, after my eating disorder had formally persisted past the five-year mark with no real improvement. I say “formally” because they were measuring from the first time I was diagnosed, although I’d actually had an eating disorder many more years before diagnosis. At the time I wore the label like a badge of honor, thinking that maybe now I was finally getting good at being sick, finally warranting some serious attention, finally deserving to be taken seriously.  (How sad.)

The second time I was given the label was during what would be my last involuntary inpatient hospitalization in a state psych ward to date, also known as hell on earth. I was hospitalized against my will for multiple suicide attempts in a 3-month period, and I don’t know what all the diagnoses were that were listed on my chart, I just know that the institution was ill-equipped and disinterested in helping anyone with anything, so the diagnoses hardly matter. My stay was during a holiday, so it was basically a holding pen; no more, no less. The doctors were all on holiday, the attendants didn’t want to be there, and we did absolutely nothing but sit in the day room from 5am to 6pm all day, every day. I think I attended a group session ONCE, in seven days. The treatment resistant issue came up after the most mundane of encounters. We were all on a point system. If we didn’t eat all of our (absolutely nasty) food at a meal, we lost points. If we argued about taking our medication (about which half of us had never agreed to or were even informed about to begin with), we lost points. If we didn’t “participate” in a “meaningful way” (definition unexplained) in daily activities, we lost points. I found out after I’d been there for 4 whole days that I’d been losing points daily for not making the bed “properly” – even though I’d 1) never been told to make the bed at all!, and 2) had never been informed as to exactly how they wanted it done. It seemed unbelievable to me that I was actually losing points for making what I’d thought was undue effort, when half the others in the joint never even bothered to get OUT of their beds most days, nevermind shower and get dressed, as I had also been doing. This, my friends, is called a no-win situation. You had to “earn” a certain number of points to advance up the levels of independence. Everyone started on Level 1 and by the time you earned your way to Level 3, you were supposed to be well enough to be discharged.  But because I was failing at rules I didn’t even know existed, I was called treatment resistant and a troublemaker and destined to never be released.  This is completely and totally and unequivocally wrong on so many levels.

What’s true is that many patients get labeled “treatment resistant” when they protest a treatment that is completely wrong for them. Sometimes they’re called that when they even ask a question about it, or object to some part of the treatment plan that doesn’t resonate with them. This is not where the term originated, although when you look at where the term originated it’s still about as useless as it is in the latter situation as it is in the former.  This type of labeling is the epitome of disempowerment. Patients struggling with mental illnesses already feel out of control enough. Taking more control away from them in a “you don’t know what you need so stop talking and listen to the omniscient doctor” fashion is further disconnecting them from themselves and weakening the innate sense we ALL have, of what we need to heal. I’ve seen it happen over and over again, and it infuriates me just as much now as it ever has.  In this sense the term is simply a way of manipulating and subduing the patient by requiring their total submission and compliance. This enables doctors to administer a standard treatment for the diagnosis, even when the patient is not comfortable with some or all of the plan. This is, to put it mildly, hardly helpful.

I tried Googling “treatment resistant,” “what is treatment resistant,” “definition of treatment resistant,” and it all basically led to the same thing. The term originated in reference to depression, and “Treatment Resistant Depression (TRD)” is officially a thing like regular depression is a thing.

Wikipedia says “Treatment-resistant depression (TRD) or treatment-refractory depression is a term used in clinical psychiatry to describe cases of major depressive disorder (MDD) that do not respond adequately to appropriate courses of at least two antidepressants.[1]

But then it goes on to say that, “Treatment-resistance is relatively common in cases of MDD (major depressive disorder). Rates of total remission following antidepressant treatment are only 50.4%. In cases of depression treated by a primary-care physician, 32% of patients partially responded to treatment and 45% did not respond at all.[2]

Guys, even when you look at the origin of the term, it sucks.  You don’t blame the patient for not getting better. You blame the treatment for not working, and then you use your five trillion dollars of research grant money to find something that does. It’s not like we WANT to keep suffering. It’s not like it’s FUN for us.  Why is this term even a thing?  I truly don’t get it.  There’s a lot of things that need to change in the mental health field, not the least of which is how providers view and interact with their patients. This is just a tiny blip on the screen. Some days (okay, all of the days…I admit it…) I get overwhelmed because it’s like being in a war. How do you even fathom where to storm the gates or how to go about it? Nevertheless…I will keep taking my tiny slingshot and slinging pebbles where I can. 😉 Cheers. ~J8


12 thoughts on “Why is “Treatment Resistant” a Thing?”

  • 1
    Anna on January 17, 2016 Reply

    So true–and “transference” is sometimes used in a similar way (i.e. you have an issue with a treatment provider, it’s not a real issue–it’s just “transference”). I’m wondering though if in the case of major depressive disorder the term is used as a research delineation? Many trials and studies specifically focus on MDD that doesn’t respond to the usual anti-depressants. Maybe like the DSM it simply started out as a categorization that allowed researchers to focus on a particular population and got co-opted into the applied settings in completely inappropriate ways.

    • 2
      Jean on January 17, 2016 Reply

      There are a whole bunch of other terms that are used as put-downs. Inappropriate, borderline, acting out, and more. They are all used to mean “something about you or what you do that I don’t like. Hope you go away soon.”

      That hospital sounds Kafkaesque. Glad you got out with your sanity intact, if bruised.

      • 3
        talktoj8 on January 19, 2016 Reply

        Sorry, that last comment was @ Anna.

        @ Jean: yes, so much yes to what you’re saying.

    • 4
      talktoj8 on January 19, 2016 Reply

      Very true and good point.

  • 5
    Samira Claire on January 17, 2016 Reply

    That hospital sounds dreadful. Amazing you were able to get out at all considering the conditions you were expected to meet, but not ever told you were supposed to be doing. Gah! 🙁

    I have had (medication) treatment resistant depression since diagnosed and put on antidepressants. Only medicine that’s even shown any improvement in my level of depression is Wellbutrin XR (especially brand name – but I can’t afford it so I’m on a crappy generic currently), and it’s not a large improvement. It just keeps me from being catatonicly depressed, which I guess is still something. This does not surprise me though, as PTSD depression is different than MDD type depression. They are two entirely different species of animal in my opinion. Regular MDD I’ve noticed seems to have more to do with the brain neurotransmitter serotonin, whereas PTSD depression seems to have more to do with norepinephrine and dopamine brain neurotransmitter issues. Just my personal opinion from trying (over my lifetime) all the antidepressants made, except for maybe one or two.

    At some point, as a person who has a mental illness, I think eventually it starts to dawn on one that everyone who says they are trying to help you is basically just making cash off of you somehow. So really, how much do they actually have vested in helping you to get well? Considering if you get well, there goes their cash cow. This is a terribly crushing realization to come to, at least it was for me. I am having a really difficult time, especially lately, not being completely cynical about anyone being able to really help me and basically have become not that trusting of any of my so called providers anymore. 🙁

    Great blog, very interesting, all good points. Thanks for posting it. I don’t know what the future holds as far as mental health treatment advances, but I can tell you right now, where we are currently at in America is not working that great for me. I feel more and more like I’m perceived by most people who are supposed to be helping me, and society at large also, as more of a burden (and a source of income for those so called helpers) than an actual living, breathing, feeling, human being who truly needs to find a way to heal, which incidentally is not my fault. I feel like a lot of people in our society, including some providers, seem to forget this fact – that it’s not my fault that I have a mental illness. Meh. :/ <3

    • 6
      ridicuryder on January 18, 2016 Reply

      Hi Samira Claire,

      I agree that it is not your fault that you have a mental illness, but in navigating the “mental health” landscape I personally find it more productive to examine my progress as if it is my fault. Many mental health providers and treatment facilities (especially lockdown/prison units) are asleep at the wheel. When I find myself way off the road – tangled up in a ditch or some trees, I ask myself …”Do the people who are currently extricating me from being upside down have any real interest in my driving habits?” I see 70 – 90% of their efforts are all about crisis management – which many do at a substandard level.

      So, the real question becomes what can I do to stay on the road in the first place…because getting upside down is more of a backslide than anything else most of the time. These occurrences, as Jade has outlined are not terribly useful…except where you can stop viewing them as a safety net. In real terms you have dropped into a trash compactor – just concentrate on popping out the top of the pile before you are crushed. Then do what you can to never being tossed back in again.

      Cheers,
      Mark

      • 7
        Jade on January 19, 2016 Reply

        I think the short version of this is: try to find caregivers that actually care. But I’m not sure I agree with examining the situation “as if” it is my fault. Caregivers SHOULD care. That’s their actual job, for which they are being paid. Most survivors have enough problems with blaming themselves for stuff that isn’t their fault already. But maybe we’re just talking semantics here. Shrug.

    • 8
      talktoj8 on January 19, 2016 Reply

      I def understand. I’ve had more people than I care to recall ask me “Do you want to get better?” Um, why the hell would I NOT? And why would I BE HERE (doctor, ER, hospital) if I didn’t? Do they think this is a game? A party? A picnic? That I chose this?

  • 9
    Anonymous on January 17, 2016 Reply

    I am amazed at all the trauma & obstacles you have survived to become the author & encourager you are. It hurts my heart to hear what you have been through. I suffered from depression for 15 years. Not having any contact with my parents is what cured my depression. I hope that will happen for you.

    I voluntarily went into the hospital once for about 4 weeks, but was a very good experience. It was Minirth Meier Rice at Baptist Hospital in Little Rock. A very positive experience.

    Jade, you are an amazing woman!!!!!!

    Love your heart & transparency,

    Faye

  • 11
    mirrorgirl on January 19, 2016 Reply

    I truly liked this post. It is honest and important, and I hope people working with patients on a daily basis have the chance to read it!

    • 12
      Jade on January 19, 2016 Reply

      Thank you for reading!

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