“The Untreatables”

I need to clarify something. For my own sake as much as for anyone else. One of the terms I hate most in the psych world is ‘Treatment-Resistant’. I’ll explain why in a moment, but first what was a new term for me. Maybe it’s not new to you, but I wish it didn’t exist at all. I was quietly checking my Twitter feed recently when these two words came flying off the screen at me. “The Untreatables”. Ughhh!

“The Untreatables”? Really? Does anyone else take an immediate dislike to this term? (As an aside if you’re interested, the tweet I read contained a link to this article). ‘The Untreatables’: the people for whom there is no treatment.

If I had skills in the cartoon drawing you would see now a group of ‘Untreatables’ gathering together in what might be some type of 12-step group aimed at recovery from untreatable mental illnesses. But I can’t draw to save myself so I’ve hopefully left the image in your mind.

I think I have gained entry into this group three times. Firstly, I was pretty quickly labelled with the ‘treatment-resistant depression’ label. It only takes two different types of anti-depressants tried unsuccessfully, and you’re there. I don’t remember how it was put to me, that this was how I was now seen but I always thought it was an odd term. I thought it applied to me personally whereas it actually applied to the illness. A small but necessary difference.

There was I thinking”but I’m not resisting my treatment!?!” I had been taking my pills, careful not to miss a dose, and I had been going to my therapy (with a man who seemed decidedly odd. But that’s another post.). How could I be defined as ‘treatment resistant’?

The second time this applied to me was many years later when I was discharged dumped by the Adult Mental Health Service in my city because I wasn’t responding to their treatment. This time, ‘treatment-resistant’ was being applied to me, the person. A social worker had been working with me using Cognitive Behavioural Therapy (CBT) and I didn’t respond as I should (apparently). Actually, I suspect the term ‘Untreatable’ was used because that’s really what they were saying. There was no treatment for me.

The same thing happened a short while later with the Eating Disorders Service I had been seeing. There I had been in group therapy (using CBT again) and I hadn’t responded as they thought I should. I was discharged dumped again with my untreatable eating disorder. Fortunately, I had got myself past the Anorexic phase before I even got seen by their Service (sitting on a waiting list for years) otherwise, I suspect I would be dead by now.

My point in sharing what was a very frustrating but also depressing stage in my life is that in each case, mental health professionals were leaving me with a sense that all this was my fault. I was either resisting treatment or I was untreatable because I didn’t respond to CBT.

I accept that in the first case, the psychiatrist involved may well have been clear in saying that my depression (the illness rather than me personally) was treatment-resistant, but in my frame of mind, I took it to be about me. It wasn’t. I wasn’t doing anything wrong. I simply hadn’t responded to the anti-depressants he had chosen. It was actually more about him than about me. It was about choices he had made.

When I saw the tweet that hit me between the eyes, I took exception to that term ‘The Untreatables’. It’s an awful description as well as being an easy way out. Class us as ‘untreatable’ and you can send us on our way.

I take exception too, to the term ‘treatment-resistant’ if it is used to describe a person.

To any mental health professionals who happen to read my blog, please think before you use either term whether it is to the patient or not. How you think about it will determine how you see your patient, regardless of whether you use the terms in front of them.

And to mental health patients, please hear me when I say

You are not treatment-resistant.

Your illness may be treatment-resistant, but not you. And I hope that you are never made to feel ‘Untreatable’. Don’t believe it, and know that it is not your fault.

There are theories that some mental illnesses are untreatable, particularly Personality Disorders. I don’t accept that, but then I’m no professional. I think it comes down to how you understand the term ‘treatment’. The Mental Health Services who chose to discharge dump me from their services could have chosen a different treatment path. They could have simply listened to me. Instead, they put a distressed and unwell person out of their systems without support. It wasn’t until a few years later when another mental health professional worked out that I had Borderline Personality Disorder (BPD) and not just depression and an eating disorder, and that is perhaps why I hadn’t responded to the earlier interventions.

I am convinced that sometimes it is just about having the time to work beyond the ‘treatment resistant’ or ‘untreatable’ labels.

Thanks for reading

 

Cate

 

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5 thoughts on ““The Untreatables”

  1. If I can keep it together through my rage, I just have to say that the author and everyone quoted are absolute idiots and and terribly ill-informed. That’s not an extreme reaction, right? But you know a tiny bit about the study I’m currently participating in, which makes any nonsense that there is no commonality nor treatment for the “treatment resistant” completely baseless. My other favorite has always been “medication non-compliant.” Often this is used simply if you cannot remember to take your insanely complicated cocktail exactly as prescribed every day.

    I will NOT get started on how clearly most of these terms were coined by old white men who couldn’t possible be failing in their ability to find novel and innovative solutions, so instead of admitting they weren’t perfect they came up with these handy little phrases to shift the blame. Oops, guess I did get started. 😉

    In any case, your doctors and health care systems failed you. Full stop. Not the other way around. And they compounded that mistake by blaming you, which is really just. . . . So many words I could use, negligent, ignorant, shameful, but I think the winner would have to be fucked-up.

    I’m really seething and wish the internet was not the internet because I want to burn that piece of trash and everything lie perpetuated in it.

    1. Oh, and because I got pissed off and forgot to include this important specific, “treatment resistant” is now being superseded by “treatment refractory,” which I think does a whole lot more to make it explicit that 1) it’s the disease, not the person; and 2) there is an answer, it just hasn’t been found yet.

      On my last frustration in this moment, consider that if you tell most patients that their disorders will never get better, they never will, because you are taking away the most powerful tool in their arsenal, which is hope. In my personal opinion, any doctor who does that ought to be charged with malpractice. The only reason I’m here, doing what I’m doing now, is because somewhere along the way someone told me I would be. To which dire pronouncement I took my typical stance of “I’ll show you motherfucker.” But very few people – and actually I am only theorizing others exist, because I’m really the only one I have ever met – will not take it as pretty much a death sentence when a doctor says, whether explicitly or implicitly, that they will never improve.

      The longer I live, the more I know that the vast majority of doctors are simply fumbling around in the dark.

      1. Sorry, but second paragraph, third sentence should read “The only reason I’m here. . . is because. . . someone told me I *wouldn’t* be.” Rather changes the whole meaning.

      2. Considering you were writing in rage, you did very well in being clear. But I have to clarify that when you said that the author is an idiot, you were speaking about the author of the article, rather than me, the author of the post. 😉

        Without wanting to make excuses, because I don’t excuse it at all, I think that terms such as treatment-resistant, untreatable and even treatment refractory are excuses for doctors who don’t have the skills, don’t have the time, don’t have the budget and perhaps most importantly, don’t have the compassion for their patients. They are reflections of the doctors themselves, and never the patient.

        Actually, I’m so glad someone said to you that you wouldn’t be here. Had they not, perhaps you would not, and I am very glad you’re here today. ❤

      3. Yeah, in re-reading, I meant the author of the article, which is not what it seemed I wrote. I was so seeing red.

        I think the reason I’m okay with treatment refractory is because, at least in definitions I have seen used to this point, you have to have been through a significant number of different interventions, instead of just having tried two different anti-depressants for at least 12 weeks each (which is so stupid). And most importantly, I have only ever seen it used as “treatment refractory depression.” You cannot have people who are treatment refractory. (Well, I suppose you could, but it’s not even good syntax.)

        Ultimately, it all comes down to the person using the term and the person hearing it. The doctor I met with yesterday, I cannot imagine her not going out of her way to be clear this is not even slightly a failing on the part of the individual. Perhaps it comes from her years of working with adolescents and young adults. But even further, the study she’s doing right now comes from her being so distraught that she could not help a young man that she grabbed a specialist in biochemical genetics and said “Help me to find some way to help him.” That is really the kind of standard to which all clinicians should be held, and I’d estimate (generously) about one-tenth of one percent are.

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