Podcast: Episode 86: What to Do When There is Multiple or No Diagnosis: What Next?

Receiving a diagnosis for me is not the end all be all. It does not guide specifically what I do next with somebody. And this week, I’m digging into a really significant, important topic: what happens when you or your client has multiple diagnoses and you’re not sure which one it is, or what happens when there is no diagnosis at all.

If you’ve had different specialists say different things about the same set of symptoms, or you’ve been to specialists and are getting no diagnoses and your scans are coming back all clear, I’m here to help this week.

In this episode, I’m giving you something to work with if you have multiple diagnoses or no diagnosis at all. I’m walking you through why it’s not a good or a bad thing to receive multiple diagnoses or a scan that’s clean, and sharing an exercise to help you connect with your symptoms and grow your sense of understanding about the direction your body and mind are asking you to go.

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What You'll Learn from this Episode:

  • The primary skills my toolkit is filled with.
  • What happens when somebody has their own agency.
  • An exercise to help you tune into your symptoms.
  • How I combine my medical background and yoga background to get results for my clients.
  • The importance of tuning into your inner sense of space.
  • Why sometimes what’s wrong cannot be found on a scan.
  • The importance of reclaiming your locus of control.

Full Episode Transcript:

Male Announcer: You’re listening to From Pain to Possibility with Susi Hately. You will hear Susi’s best ideas on how to reduce or even eradicate your pain and learn how to listen to your body when it whispers so you don’t have to hear it scream. And now here’s your host, Susi Hately.

Welcome back. With this episode I want to dig into a really significant and important topic around what happens when you or your client have multiple diagnoses and you’re not really sure which one it is because you’ve been to different specialists and they’ve all said different things about the same set of symptoms. Or when you’ve been to different specialists and there still is no diagnoses or getting scans back and the scans are saying that all is clear.

So what do you do? What do you do as the client? What do you do as the teacher? So this is a scenario that I find myself in quite a bit. And given the work that I do, I work with people who have a chronicity and persistency of symptoms of all sorts. And people know me as someone who has a foot in a number of different camps.

I come from a kinesiology background, I worked in physical rehabilitation for the years post-graduation, as well as at the hospital during my schooling. I’ve had my programs studied at a university level, one on cancer recovery and another one on idiopathic pulmonary fibrosis. So I have a reputation of being able to understand the medical model and the medical world, and I’m also from the yoga world.

People know me as someone who does some acupuncture. I can sometimes be a bit woo-woo. I mix those worlds together and I come out with some pretty awesome results for my clients and with my clients. So I am somebody who when somebody doesn’t have a diagnosis or when somebody has multiple diagnosis about the same symptoms and they’re really unsure of where to go, it’s not uncommon for them to come to me.

And when I’m training my trainees, the stuff that I’m teaching you here on this episode is what I’m teaching them as well. So with this episode I’m going to walk you through a little bit about why it’s not a bad or a good thing about these multiple diagnosis, or when you get a scan that’s clean, from my perspective anyway.

And then I’m going to walk you through a little bit about why this could be a good thing, and that’s how I frame it for somebody and how I help them get their control back. And then I’ll take you through a little bit of an exercise and guide you to some other podcast episodes I’ve recorded around what you can really do with your symptoms and really tune into growing your own sense of understanding about the direction your body or your mind is asking you to go.

So with that, it’s interesting, I remember being at a conference years ago where the researcher was talking about back pain and how a person can have the same symptoms, go to five different medical specialists and get five different diagnosis. So one might say it’s SI, another one might say it’s a QL issue. Some might say it’s a lumbar issue, and it can be any number of things inside that lumbar area. Others might say it’s piriformis, someone might say it’s a bursitis that’s related to what’s going on in the back. And so that’s just medicine.

Then you toss in physical therapy, osteopathy, chiropractic, yoga, massage therapy and the various other ways of helping people get better and you’ll have even more possible diagnoses. So it becomes really curious because what do you do?

Because sometimes when people are looking for that diagnosis they’re wanting to have a name for the set of symptoms that they have because the thought is if you have the name for the set of symptoms that you have, then you’ve named the problem and then you can fix the problem. And so that’s what there is a hope for.

But when you’re not getting or when you have multiple diagnoses then it’s like what the frick is the problem? Where am I supposed to begin? And if you’re in the opposite scenario where there’s not a diagnosis at all and scans are coming back clear and yet you still have these symptoms, it’s like well then what the F? What’s wrong with me? There’s got to be something wrong that I can pinpoint. That I can then name, which then will give me direction for the solution.

So here's what I have found. Now, given the work that I do, and the people that I see, and the toolkit that I have, it may or may not be surprising to hear that the diagnosis for me is not the end all be all. Knowing the person's diagnoses does not guide me specifically in what I do next with somebody.

My toolkit is filled with three primary skills: movement, breathing, stillness. So I can teach them how to move and how to move better, retrain their neuromuscular patterns, reduce their compensations. I can help people breathe better. I can help people become still and quiet and help them become aware of what's actually going on. Whether I have a diagnosis or not, I can do those three things.

Now, the question might be but doesn't the diagnosis guide you about what you then choose to do? Isn't there like a specific protocol for specific conditions? Sure, there's protocols. There's lots of protocols for a bunch of things. But how do you choose the protocol? Is it based on the name of the condition or is it based on the person who's embodying that condition?

Because what I know to be true, is that I've yet to meet two people express MS the same way, or who express rheumatoid arthritis the same way, or who express back pain the same way. Plus, we need to keep in mind that those people who are expressing it differently, they also have different lives.

I've worked with people who have QL issues that are cyclists. I’ve worked with people with QL issues that are CrossFitters. I've worked with people with QL issues, who are desk workers and don't do any activity. So who the person is and how they live their life is also going to dictate what I then do and how I work with them because their body is going to be asking for something different.

So here is that first bit on the bumper sticker is that I'm not programming based off of condition I'm programming based off a human being, how they move and how they live, and how this is being embodied into them. Because the other piece of it is that each person, in addition to their symptoms and their diagnoses, have preexisting scenarios.

Their life up until this point. Things that have happened or have not happened. Trauma that they've experienced. All of this will feed into the experience of what to do next given the set of symptoms that they have. So diagnosis or no diagnosis, I can continue to do my work.

In fact, I found it interesting many years ago when I had a client come in and it was a January and her diagnosis was rheumatoid arthritis. Then three weeks later when she came back the diagnosis was lupus. Then when she came back three weeks after that, it was like, oh, no, I don't think it's lupus, it might be MS. Then three weeks later after that, it was like, no, it's definitely not MS, it might be fibromyalgia.

So the continuum or the trajectory of diagnoses, like she had at that point four diagnoses. So if I had gone in and said, okay, we better do the yoga program for rheumatoid arthritis. Or the next time yoga program for lupus. Now I'm chasing after the condition, as opposed to really meeting the person where she was at and who she is, what's the life that she leads, and the life she wants to lead, and these set of symptoms that are here.

So I'm talking to the symptom and the expression of that symptom that is currently living inside of this person who lives a certain life. So that's the part that is, for me, the most important. So someone could come in and not tell me the name of something they have, they can just tell me what's going on in their body and then I can ask them a bunch of questions about their life and that will help me on their way.

What's interesting, though, is that when we have people in scenarios where there's multiple or no diagnoses, there also can be an added layer of frustration, like, why the F can't they all agree on what it is? I just want to have an agreement on the problem so I can go and solve it.

Or when there is no diagnosis, the scans are all coming back clear, it's like well, there's got to be something wrong. I can't feel this crappy, there's got to be something wrong. Or maybe there's not something wrong that can be found on a scan. I didn't say that there's nothing wrong. What I said was that there was nothing wrong that can be found on a scan.

I had this experience recently with a client who was nervous about a diagnosis she was scared might come to her. But so far the scans had all proven to be clean and clear and that particular diagnosis was not showing up. But she was still afraid because there was a lot of symptoms and there had to be something wrong.

Then over the course of our month together, her symptoms started to reduce, and reduce, and reduce, and reduce. To the point where she said, you know what? Maybe that is not the diagnosis at all. Maybe it was just the way I was moving and I was breathing.

Maybe, I don't know. That's actually not for me, as a kinesiologist and a yoga teacher and yoga therapist, to really state or figure out. Because my job really is about helping someone function better, move better, breathe better, become more quiet so they can tune more into the awareness that is present. And this can be really powerful.

It can be powerful because when people are in that frustrated, sometimes desperate state of, “Can’t someone just tell me what's going on?” There is a control that they have given away. There's a power that they've given away. So as I'm working with people, what I'm helping them to do is I'm helping them to bring back or tune into that locus of control that's inside. Which is some of the most profound levels of support, and compassion, and love that someone can give themselves.

When I've seen this happen for people, what ends up occurring is a fortification, a resiliency, an ability to adapt and shift directions as needed pretty quickly. The depletion level goes down as their inner container starts to grow. Their sense of capital K knowing really starts to develop. And ultimately what that is, is inner power. That's a reclamation of that inner sense of control.

And we know in the pain science world that that's a really strong SIM, or safety in me. I actually did an episode on DIMS and SIMS that we'll put into the show notes so that you can dig more into that concept. But when someone has more safety in them, their symptoms go down. Their brain interprets the scenario, or the event, or the experience as safe. Versus when there is an experience of threat, symptoms will go up because the brain is interpreting the experience or the event as dangerous.

So how do I help someone to that place? From that place of frustration, of not having a clear diagnosis, a clear problem to solve, or no diagnosis? Well, as I mentioned earlier, when someone says to me that there's got to be something wrong, I mean, the scans are coming back clear but why do I feel this way? There's got to be something wrong. And then maybe there's not, not in a sense for what a scan can pick up.

Because scans can’t pick up certain kinds of tissue. Scans can't pick up minuscule, minuscule, minuscule, minuscule things. Scans can’t pick up forces at play. It's really powerful what happens when someone starts to change their habitual patterns, their habitual neuromuscular patterns, their compensation patterns said in another way. That no matter what's going on in them, people compensate. We all compensate. And when we can move better, and move with more efficiency, it's extraordinary what can happen.

I remember a number of men that I was teaching at a period of time and each one of them would come in and say I'm not doing anything, why are my biceps getting bigger? Why am I getting more toned? It's because now the body parts that are meant to be doing the work in their day to day life was now doing the work and they weren't using their jaws or their shoulders to walk up the stairs, they were actually utilizing their legs now.

Now, that might sound funny, but just watch yourself the next time you go up the stairs. Are you pulling your shoulders up to your ears and clenching your jaw? Or holding your eyes? Or are you actually utilizing your legs? It's curious, isn't it?

But when we start to improve those neuromuscular patterns, it's not uncommon that we stand taller, more perpendicular to the sky and the earth. There's just a different way that forces are being absorbed and dissipated through our bodies. There is a greater strength and steadiness. And with that we can bear load better. It's less depleting many times.

Add in this component of being able to breathe better, and just to become quiet. Quiet enough to feel the whispers, to tune into the things that are going to aggravate your symptoms. That there is power in and of itself, tuning into the whisper that would cause the symptoms to increase or to express themselves any way. Intervene at the whisper level, and you won't have to hear the body scream not nearly as much, diagnosis or not.

So it's why when someone does have a diagnosis of rheumatoid arthritis, that their symptoms can be so well managed because they can listen to the whispers of the flare up and not actually have a flare up. So the condition still exists, but because of what they've tuned into, by tuning in with their awareness, and their body, and their breath, they can tune into the factors that are contributing to when their body moves from being in a state towards more of a state of symptom aggravation.

With this is power, locus of control. So if we're doing this ahead of time, before the diagnosis, maybe if for when it actually comes down the pipe, when it does come, they’re way more steady to be able to absorb it and to respond to it. And they can even determine how they want to go about making a shift or a change.

Because at this point, when someone has reclaimed that inner sense of power, they have a better ability to speak for themselves, advocate, and have their own agency. And that can make such a difference in the trajectory of whatever the condition might be. But on the reverse side, their healing trajectory.

So a way to think about this, if you want to experiment, you're in that place where the diagnoses are multiple for the same set of symptoms, or you're getting scans back that are clear, I want you to consider something. Consider that symptoms are indeed problems to solve. And perhaps they're also a sign. What is that sign?

And an exercise I did with a group of people the other day is go into the symptom itself and pretend the symptom itself is a human being. Maybe a five year old human being, somewhat young and saying, “Hey, what's going on? What do you need? What do you need?” And watch that you don't jump out and start thinking about the symptom and getting emotional about the symptom, but just come to the symptom itself.

Much like coming down to that five year old and saying, “Hey, what's going on? What do you need?” Yeah, and see what it actually says. Now, it might not answer right away. But if you are quiet enough and hone that skill of awareness and quiet, it will start to speak and guide you as to what it's there for.

This adds to this inner power I was speaking about, because there's a tuning into the ebb and the flow of what's going on in your own system, to your own spirit, your own soul, and what it's asking for. And it might not be expressing itself in words, but you can feel the ebb and flow of its expression in some form. Let it guide you, experiment with it, follow the hunch, and see what arises.

And then, as I'm working with my clients with their better movement patterns, and their better breathing patterns, and truly on this physical level of their body and their breath. As their body starts to relax and settle, get steadier and stronger, it's really interesting to see these worlds of awareness meld together. The awareness of their body, the awareness of their symptom exploration. And then where that leads them.

And it's fascinating because sometimes it leads them right back to their physician's office and saying, “Hey, doot, doot, doot, doot.” And then something occurs and then they get the test they need to get and they discover what the thing is that is the thing. But they'll acknowledge that they would not have had the fortitude or even the thought pattern to go there in the first place.

But because of being able to tune into this inner sense of space, help improve the way their body moved, help improve their breathing. Just connect overall with their ability to respond to forces at play. Improving their ability to down regulate and tune into that inhale and exhale can change everything. Having that locus of control, reclaiming that for yourself, can truly change everything.

So if you're in this place, multiple diagnoses or no diagnosis at all, ask yourself. Go to that symptom if it feels okay to do that and just say, “Hey.” Not what the F? Don’t get mad at it, I don't recommend that. But just sit with it. Listen, be quiet, tune in.

In the show notes there are also episodes related to this that will help guide you, so work with those. And also on my YouTube channel, which you'll find in the show notes as well, I can take you through a number of different video movement series that will help you kind of just check in with your body that much more.

And if you want more of my specific help, then send us an email to [email protected] and chat with Kiya and she'll be able to support you in the direction that you want to go. I'd be happy to help you.

Oh, and hey, if you resonated with this episode and you want to dig into it even more, you will love our Yoga Therapy Certification program. All you need to do to find out more details about it is email us at [email protected] and we can send you the information that you need. See you there.

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