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.“
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.“
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