Recovery, remission, and the people who get most of the way there

I'm a Registered Clinical Counsellor in British Columbia and my caseload is entirely chronic pain, chronic illness and trauma. I also live with several chronic pain conditions myself, including post-surgical occipital nerve stimulation. So I've spent a lot of hours in both chairs, and this post comes out of the friction between them.

I want to start by saying the obvious thing sincerely, because what follows could be misread. The work this community does is real work. Threat appraisal changes pain. Learned protective patterns can be unlearned. People who were told their spine was crumbling have gotten their lives back by taking the danger out of the signal. I'm not here to relitigate any of that, and I don't think the mechanism is in question.
What I keep running into is a narrower problem, and it's the one I'd like to hear how people here handle.
It's the patient for whom the work helps partway.

They do the reading. They do the writing. They stop bracing. And something genuinely shifts — the flares get shorter, the fear drops, they get back to work, they sleep. But they don't arrive at the ending they were promised. They land somewhere around half or two-thirds of the life they had, and then they stall there.

Here's what I see happen next, and it's the part that worries me. Because the framing they were handed was binary — this is reversible, and recovery is available to you if you do the work — a partial outcome doesn't read to them as a partial outcome. It reads as a verdict about them. They didn't dig deep enough. They're still repressing something. They didn't believe hard enough. I have heard all three of those sentences, in almost those words, from people who had in fact improved substantially.

And then the mechanism this community understands better than anyone turns around and bites. Because "I am failing at getting better" is not a neutral thought. It is a threat signal. It raises vigilance, it raises muscle guarding, it raises the volume on everything. The story about the failure becomes a driver of the symptoms. We end up with an approach that is genuinely effective producing a subgroup of people who are worse off for having tried it — not because the model is wrong, but because it was claimed more completely than it can deliver.
I don't think the fix is to teach less of it. I think the fix is in how we set the target at the start.

A physician colleague put something to me a while ago that I've been borrowing ever since. She said that clinically, she doesn't think in terms of recovery. She thinks in terms of remission and relapse prevention. That's ordinary medical vocabulary and it has been enormously useful to me, because it does something the recovery frame can't: it makes a substantial-but-incomplete result into a real clinical outcome instead of an unfinished one. Sixty percent better, held steadily, with a plan for flares, is a success in that vocabulary. In the recovery vocabulary it's a person who hasn't got there yet.

So what I do now, at the start rather than at the point of stall, is name a spectrum out loud. Something close to: here is what this work reliably does, here is the range of how far it takes people, and here is how we'll know it's working. Symptom load comes down. Function goes up. Flares get shorter and less frightening, and you learn to handle one without losing three weeks. Any of those is a real win and we're going to count them as wins when they happen.

I also say, explicitly, that if you improve and then plateau, that's information about your physiology and not a report card on your effort. And I keep a door open — if something isn't adding up, we look again at what else might be going on rather than pushing harder on the psychological work. Some people have more than one thing happening at once. Saying that at the outset costs almost nothing and it means the plateau, if it comes, arrives inside a frame that can hold it.

The clearest example I've worked with was someone with POTS. She had done a great deal of nervous-system work by the time we met, and it had genuinely helped — her fear of her own symptoms had come way down, she'd stopped bracing through every episode, and that mattered. But she was still greying out when she stood up, and she had begun to read that as evidence she hadn't done the work properly. What she actually needed was treatment for low blood volume. You cannot think your way into more blood. Once that was addressed she improved in a way no amount of further psychological work was ever going to produce — and the nervous-system work she'd already done is a large part of why she could handle the months it took to get there. Both of those things were true at once. Neither was a substitute for the other, and the story she'd been telling herself in between — that she was the problem — was the only part that wasn't useful to anyone.

Which brings me to the question I actually can't settle, and why I'm posting rather than writing this somewhere else.

The obvious objection to everything above is that belief is load-bearing here. If I tell someone on day one that this might take them 60% of the way, have I just handed them a ceiling? Does naming the spectrum early cost me the conviction that makes the work function at all? There's a version of this where I'm being scrupulously honest and also less effective, and I don't think that's a trade I get to dismiss just because honesty feels better.

I've gone back and forth on it for a few years now and I haven't landed. My current compromise is to be unhedged about the mechanism and honest about the range — full confidence that this is worth doing, no promises about where it ends. But I hold that loosely.

So: for those of you working with people who improve substantially but not completely — how do you frame the target at the outset? Do you name the range, or do you protect the belief and deal with the plateau if it arrives? And if you've watched someone take a partial result as a personal failure, what actually helped?

Elysia Bronson, MA, RCC — chronic pain, chronic illness and trauma. Abbotsford, British Columbia.
 
Hi Elysa:
It's good to know more Canadian coaches and mental health professionals are out there doing this work. Not long ago I told a friend about TMS, she had a hard time accepting it because we couldn't find anyone doing this work in Canada at the time. She accepts it now and is doing great!
I struggle with what might be both actual physical symptoms and neuoplastic pain. My own perspective is very chicken and egg. Whatever drives it isn't my problem to solve. Living life to the fullest goal.
When I was pretty low, and I asked a physical therapist if I'd ever be pain free and stop suffering he framed it this way: Our goal is for you to be able to do the things you want to do, however you do them.
As a person who still has symptoms but has also had periods of far less pain and has absolutely conquered many TMS symptoms and the mental suffering that comes along with these things, I keep "to do the things I want to do" as my goal. That keeps it open, flexible and reasonable. Like anything in life, I have a few bucket list items I'd love to do in my lifetime, but WILL I accomplish them, who knows?
Certainty is part of a TMS personality of perfection and I think to some degree, that might be what you are dealing with in clients. They want assurance, they want answers and they fear uncertainty which is why people get tied up in proverbial knots trying to control everything.
Where someone "gets" to in their journey is simply not in your control, but perhaps you could let them know that you'd like to help them get to the point they can stop fear surrounding the things they want and love to do. Sometimes that means doing them all the way, sometimes that might mean doing them with modification for a time until they have the confidence to do all the things no matter what.
 
Elysia,
It is great to know there is a TMS therapist working who is so thoughtful and caring. Your clients are very fortunate.

I agree with @Cactusflower. We have to get more realistic and specific about what "recovery" means to each person. I state that I fully recovered from TMS, but what I mean really mean is that I no longer have fibromyalgia and chronic migraines. I have continued to have relapses of TMS that present with an astounding variety of different symptoms. I do find that I have to again "do the work" and dig deep for what may be going on with me psychologically that has brought on another round of TMS. And even though I am able to recover from each bought of TMS, I do not have perfect health. I have aches and pains and allergy symptoms and other annoying things. But I don't define success as being completely free of any physical symptoms. I have to admit to being human and the inevitable pain that comes with it. But as Buddha said, "Pain is inevitable. Suffering is optional." I think Cactus has defined recovery perfectly as being able to do the things I want to do.
 
For me, the biggest shift was realizing that I wasn't saying I would never improve. I was taking improvement completely off the table as a requirement for living my life. I stopped trying to prevent a "relapse" or control every symptom, thought, or feeling, and started letting them be there while continuing to live as though I were stuck with them forever. Ironically, that was what made me feel the most free, because I no longer needed my symptoms to go away in order to feel okay.

And honestly, I think it’s important to say that this isn’t an overnight fix. For me, it took a few years. If I had to guess, I probably had some form of “CPTSD,” but I don’t really like getting caught up in labels or diagnoses.

What really helped me was having a realistic goal. It’s not “I need to get rid of these thoughts/feelings/sensations.” It’s “I want to be unbothered by them, even when they’re there.” That, to me, is what actually sets you free.

And if you look at it from a more biological perspective, our bodies are designed to return to baseline. When we fight or resist a feeling, symptom, sensation, anxiety, etc., we’re basically reinforcing the idea that it’s dangerous and needs to go away -- but this is the path, let your body do its thing to return to baseline. Feeling like you’re losing control? Good. Let it be there. Feel anxious? Fine. Let it be there. You don’t have to fix or get rid of any of it. Go live life. Stop organizing your life around getting rid of the symptom, and go live it.

It truly is a process of teaching your brain, over and over, “I’m okay either way" and it gets quite boring.
 
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Cactusflower, Ellen, HealingMe — thank you, all three. I came in asking whether to name a number, and you've collectively told me the number is the wrong object. That's a better answer than the one I was fishing for. And Cactusflower, thank you for the welcome too — you're right that there aren't many of us up here, which is part of why I came looking.

Your physical therapist's line is going on my wall. "To do the things you want to do, however you do them." It does what my sixty-percent framing can't: there's no ceiling to hand anyone, because the target isn't a fraction of a former life. Nobody can fail at that the way they can fail at a percentage. Credit to your PT, and thank you for passing it along.

HealingMe — "I want to be unbothered by them, even when they're there" is the cleanest version of this I've read. What strikes me is that it isn't a lowered bar, it's a different bar. And I think you're right that the fighting is itself part of what keeps the volume up. "I'm okay either way, and it gets quite boring" made me laugh, and it's also most of the treatment.

The "few years" part rings true, too. I spent a stretch in a wheelchair and I'm back to functioning well now — full-time hours, research projects going again. Some of that is exactly what you're describing: reframing, tracking, adjusting what I expected. Some of it is medication. I couldn't cleanly separate the two.

Ellen, I want to thank you specifically for how you said what you said, because it's the most useful thing in this thread for me. You state that you fully recovered — and then you tell me plainly what that means: no more fibromyalgia, no more chronic migraines, relapses that still arrive with an astounding variety of symptoms, aches, allergy symptoms, not perfect health. That's a real and enviable outcome and I wouldn't dream of talking you out of calling it recovery. But it isn't what a frightened person on day one hears in that word. They hear gone. The gap between those two isn't your problem — it's a vocabulary problem, and you've described the fix better than I managed to.

On certainty, Cactusflower — I think you're right that much of what people bring me is a demand for assurance, and that the demand itself is doing damage. The one place I'd hold it slightly differently: when someone doesn't get all the way, I want the first thing on the table to be their physiology rather than their character. Not because personality doesn't matter, but because "you needed too much certainty" and "you didn't do the work well enough" can land the same way from the other chair, even when they're offered kindly. I'd rather hand people the open goal you're describing and let the rest surface on its own.

And here's where I'm still stuck, if any of you want to take it up. Unbotheredness is a wonderful target once I'm confident there isn't something treatable underneath that hasn't been found yet. Early on, I often can't tell. How do you know the difference — between a symptom to stop fighting, and a symptom that's still asking for a workup? That's the judgment I get wrong most often, in both directions.
 
Hi Elysia,

I think one of the reasons people blame themselves for plateauing is because the mind-body approach to symptoms is so often referred to as 'the work' and 'work' is a loaded term for hardworking, conscientious TMSers because of upbringing and/or societal conditioning along the lines of 'work hard, and do things right, and you'll get results'. This, of course, also feeds into TMSers' perfectionistic tendencies, which adds tension and keeps the brain and nervous system hyped up. Whereas, from my experience, improvement has come from a light touch, not being hard on myself in not living up to any self-imposed rigorous A+ student type standards, which is hard for most 'driven' TMSers to accept, but as a counsellor you can gently remind your clients of this.

The knowledge and acceptance of that one's brain responds 'in the background' to how you are responding to life without you noticing, without always any overt evidence of this happening, is something that helped me a lot.

I also found the neuroplasticity framework helpful... The early improvements I experienced came because the habits driving those symptoms were less ingrained. Other patterns were more deeply wired—not my fault, since I'd relied on them more as survival strategies. At some point in the past, those mental behaviours and reactions worked for me, so I kept using them. That's about survival, and there's no blame or fault on my part in that.

I also accepted that it takes time for the brain to lay down new pathways that bypass the more ingrained ones, and for the brain to "prefer" a different way of behaving and reacting—until those different ways become the automatic, go-to default response. Essentially, I accepted that it takes time to form new, more life-affirming 'habits'. In relation to this, knowing that our brains are neuroplastic and can change right up until we're on our deathbed was something that gave me tremendous encouragement.

I like this quotation from Steven Oat's book 'Rewire Your Mind Without Willpower: A Brain-Based Guide to Breaking Mental Loops, Calming the Nervous System & Creating Lasting Change':

"There’s a question that’s probably been following you throughout this book. Maybe you’ve asked it out loud. Maybe it’s just been sitting quietly in the back of your mind. Is this really going to work for me? And the honest answer is: I don’t know. I don’t know what patterns you’re working with, how deeply they’re ingrained...
But here’s what I do know: your brain can change. That’s not a theory. It’s a fact. And every person who has successfully rewired their mind started exactly where you are now—uncertain, skeptical, tired of trying things that didn’t work before."


How do you know the difference — between a symptom to stop fighting, and a symptom that's still asking for a workup?
By 'workup' do you mean medical work up (that you're trying to work out if a particular symptom is physical or mind/body in origin) or exploring what might be going on that's keeping the mind-body symptoms going? I'm asking because the answer would be very different depending on which you mean—medical tests to rule out structural causes, or exploring what thoughts, behaviours, or stressors might be keeping the nervous system activated.

EDIT: Just thought I should say that I am not a coach or therapist. I'm sharing this from my own personal experience. For over 18 months, I was completely bedridden with mind-body symptoms, and I was housebound for two decades. By taking consistent 'baby steps', I've slowly built back to a normal life by comparison. While I still experience symptoms and have hit a bit of a plateau—as, although I do continue to improve, the improvement is glacial—the difference in my quality of life is night and day.
 
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Unbotheredness is a wonderful target once I'm confident there isn't something treatable underneath that hasn't been found yet. Early on, I often can't tell. How do you know the difference — between a symptom to stop fighting, and a symptom that's still asking for a workup? That's the judgment I get wrong most often, in both directions.
Having spent over a decade on this Forum, this is the question that gets asked and debated the most here. The conclusion I've come to is that there isn't any way to know. The MindBody is so intertwined, so complex, and so individualized that there is no definitive answer. Developing comfort with the uncertainty is what should be cultivated. There's a confidence in knowing that I can explore a medical answer to a new or persistent symptom without losing my way and tipping my thinking into a belief that everything wrong is physical. This confidence comes from being well versed in the theory and practice of MindBody medicine and the knowledge I've gathered about myself and my psyche. Knowledge is power.
 
My own therapist suggested that for some of us, this process is like the peeling of an onion.
The client may be able to get through many layers quickly, or for others it could be slow. She was clear when suggesting I was “done” for “now” and left her door wide open if I felt I needed to return. Do you have an intuition when people need to be increasingly independent to move forward? Can you suss out of it’s need or hand holding?
My therapist and my pt began adjusting my visits. From every 2nd week to monthly, “to not over holidays” when they were “off” just to see how it would go. Even if it was stressful for me and I still had constant symptoms they assured me I managed successfully. It was a more tangible thing to show me and it’s helped with plateau’s and with flairs.
I think the thing that helped me most with plateaus a book by one of the forum members called Defying The Verdict How I Defeated CRPS. She writes from the perspective that plateaus can be part of the process or even necessary to eventually bring one to a next level whether that be physically, mentally, emotionally or spiritually. A plateau is not the end. It’s merely a plateau. Place weight on the things people can do and are doing.
 
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