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Show Notes
Many people with ME/CFS, Fibromyalgia, POTS, Long Covid and related chronic illnesses describe recovery as a "spiritual journey." Years ago, I rolled my eyes whenever I heard this. As someone focused on science, physiology, nervous system dysfunction and understanding root causes, it made little sense to me. But after interviewing many people who recovered, I began noticing a pattern. In this video, I explore why so many people describe recovery this way, what they actually mean by it, and how the lessons learned through chronic illness can sometimes support both quality of life and recovery progress. We explore: • Why chronic illness often changes what we value most • How suffering can force us to re-evaluate priorities • The difference between acceptance and resignation • Letting go of control, expectations and perfectionism • Why living in the present moment can reduce unnecessary suffering • How these changes may help reduce push-crash cycles and setbacks • Why some people describe recovery as a transformative life journey Whether you consider yourself spiritual or not, this discussion may offer a different perspective on recovery and what can be learned through adversity. If you are new here, I'm Dan Neuffer, author of CFS Unravelled and creator of the ANS REWIRE recovery program. Please share your own experience in the comments: Have you found that chronic illness changed your priorities or perspective on life? Do you see recovery as a physical journey, a personal journey, a spiritual journey—or something else entirely?
Timestamps
Links
Here is a link to the ANS REWIRE program.
Transcript
Maybe you just reacted similarly to the title of this video as I would have done many years ago. Maybe you reacted in the opposite way. Either way, I'm gonna share some of my journey here, and I hope that you won't judge me too harshly. You gotta understand the guy I was a decade ago. For those of you that don't already know me, I'm Dan Neuffer.
I'm the author of CFS Unravelled and the program director of the ANS Rewire recovery program for people experiencing ME/CFS, post-viral illness, fibromyalgia, POTS, MCS, and related illnesses. Well, and perhaps the title says it all of the book, um, Get Well By Treating the Cause, Not Just the Symptoms of CFS, Fibromyalgia, POTS, and Related Syndromes.
So what is all this about? Well, now, here's a page talking about mitochondrial dysfunction, and here I talk about immune dysfunction, neurotransmitter dysregulation, microbiome pain sensitization and of course nervous system dysregulation I'm a science guy. That's how I think. That's how I'm wired. I like joining the dots.
I like understanding how and why things happen. I'm not interested in covering up symptoms. I want to fix the root problem. So having just been recovered a couple years earlier after seven years of chronic illness, you can imagine my shock during my early recovery interviews when someone said these words, "It was a spiritual journey."
What? Give me a break, right? I'd been lying on the couch for years. I was bed-bound for some time. My life was a nightmare, and somehow against all odds, I found a way to recover and to get my health back, and I did it through science, through understanding, to learning how to affect the nervous system and how to heal the body and working more effectively with healthcare practitioners.
A spiritual journey? Give me a break. You know, I rolled my eyes so hard I almost injured myself. But then I heard it again, and I'm like, "Okay, what's going on?" You know, this is, this is weird, right? And then the real kicker started coming out of people's mouths. When people said this, I just wanted to click the mute button.
I'm like, "Ah, I can't publish this. This is so offensive." They said things like, "I'm glad I had the illness." Now, I'm not talking about folk who had a bad month. I'm talking about people who were sick, seriously ill, sometimes for years or decades. How could they say something like this? Now, I have to disclose that to this day I'm not glad I had the illness.
You know, whilst I was taken aback the first time someone said this, I did my best just to accept these statements, to be respectful. Now, I respect free speech and that people have differing opinions and different perspectives. But over time, as I learned more not just about how the illness works, but how people recover and also more about who gets the illness and why they get the illness, I started to change how I think about things.
You know, the truth is, I have to admit it, I was actually quite ignorant back then. And as the years have passed and my experience has grown, this aspect of recovery, this journey, spiritual journey if you like, has become more and more important. So in this video, I'm gonna talk to you about why people describe their experience this way and why if you don't, you may actually be missing a huge opportunity not just to change how you experience your life now, but actually an opportunity for making more recovery progress.
So let's get into it.
In the face of suffering, we discover. People who haven't been ill longer term struggle to understand just how bad it is, don't they? It's tough. Maybe you've had thoughts like, "Why me?" Or, "I can't do this anymore. How am I supposed to cope with this?" We really get pushed sometimes that it just feels like it's too much.
But then the next day, eh, it's another day. We soldier on, don't we? Maybe it's a bit better, maybe something good happens. Who knows? You know, when we're healthy, it's interesting what we think matters. Maybe re- reflect on how much effort or angst was involved in buying your car or the colors of your kitchen in the past, or what kind of technology your TV has.
And now in the face of all the suffering, seriously, like, who cares about stuff like this? Suddenly we just wanna have a little bit of joy. We wanna spend some time with people. We wanna eat what we wanna eat. Isn't it interesting how suffering takes us back to the basics? Isn't it interesting how it makes us reflect on what's really important to us?
In the past, perhaps we worried about what other people thought. Maybe we always tried to help everyone else, even neglecting ourselves. But again, the pressure of the illness really forces us to change our ways, to show more gentle attention and compassion towards our own needs
Okay. You might already say there's a journey, a spiritual journey. It's reevaluating your priorities and what really matters. But the fact of the matter is, life's still hard when we're suffering, right? But another source of suffering is how this impacts our lives. Thinking about the things we've missed out on, the things we did wrong, the things we can't do tomorrow, next week, or in the coming months.
There is a lot of suffering thinking about these things. But in a way, these things aren't real. Yes, they may have happened in the past, or they may happen in the future, but the suffering we're experiencing here is in our mind. And whilst many of us spend our lives in our heads, and with this kind of suffering, maybe even before we got ill, when you're suffering with the illness, there's often a shift.
And the reason for that is simply that we don't have the bandwidth for it anymore. There's no capacity left. We can no longer do it sometimes. We're too exhausted. And in that moment, something amazing happens. We let go of this imaginary world of the past and the future, and we become connected to the present moment.
And in the moment, becoming connected to what we are doing and what is happening around us, we can often find respite from that unnecessary aspect of suffering. We suddenly seek distraction from our thoughts to something else that is happening. It's similar with emotions like guilt or fear. These may dominate your life until you suffer so much you simply can't do it.
It sounds bad, but actually, it's kind of liberating. There's this resignation that what has been has been, and what will be will be. Suddenly, guilt and fear dissolve. It's like, I just can't do those emotions anymore. And so we move out of our heads and thoughts and the associated suffering into the real world, into the present moment
So when people let go of being in their head and they become mindful and connect to the present moment, their suffering can reduce. But in the present moment, there is still suffering when we're chronically ill, right? Not every moment, but well, sometimes it feels like that though, doesn't it? So what comes next?
Eventually, we realize that whilst we may be working towards recovery, we cannot fix our health right now. We can't do this or that or be cured today. It's gonna take some time, right? And even if we don't have hope for recovery and resign ourselves to being ill, which I know all about, having done that myself, we face the inevitable conclusion that this is how it is.
I've seen people often so distressed about being ill, about it being unacceptable, unjust, and so on, that all they experience centers around these things. Not only don't they accept reality, but they don't even move forward to change it in any way. But eventually, many of us develop an acceptance, and sadly, many of us develop a resignation.
We, we give in to the illness. But these are actually different things. You know, you can accept the illness but not resign yourself to it It's like you resign yourself to the fact that it's like this for now, but you still aim to make positive changes for the future. But finding this acceptance allows you to let go of things because you finally recognize what is and what isn't possible, so you can let go of things like control because you can see that it's an impossible task.
You do this because you're unwell, but in truth, control of everything is unsustainable, even for well people. And so it's part of this spiritual journey. We also let go of expectations. Seriously, if planning things and then being not well enough to show up over and over isn't gonna teach you to let go of expectations, what will?
We let go of perfectionism because things are far from perfect when we're ill, right? So trying to maintain this way of engaging with the world, it, it becomes n- not feasible. What a bizarre concept, right? We become so diminished that we can't do the things that drain us, and this letting go liberates us.
And when people recover from the illness, what was a coping mechanism during the illness then becomes a choice, a new way of engaging with life that feels so much better, and that's why they speak of a spiritual journey. I'm gonna ask for your thoughts around this, your experience, because I think it's interesting that we hear each other's opinions and learn from each other.
But before we get into that, I want to point out how this spiritual journey is also an opportunity for your physical recovery from the illness. And the reason for this is because it impacts not just your internal world, but also your mental and emotional experience of your life, but it also impacts the external world.
So think about it. What makes you feel better, and what makes you feel worse? Hopefully, you can recognize that if you overdo things, uh, like push yourself, that those things lead to flare-ups. Hopefully, you recognize that it's not just physical things, but also mental pushing, like studying or heavy thinking.
Even emotional upset can impact you, right? If we can find a way to be more at peace, to think less, to push less, to let go of having things be like this or like that, chances are that we're gentler with ourselves. And we're less likely to trigger setbacks. And if you can find some peace and more happiness in the moment, then we are more likely to look for positive steps to do something supportive, rather than being frozen in suffering.
You know, most people with this illness do too much and too little at the same time, keeping themselves locked in this everlasting push-crash cycle. So embracing this spiritual journey, finding acceptance, your limitations for now, and finding some kind of peace and letting go of baggage wherever possible, these things can be really powerful steps forward.
Now, speaking of steps forward, I hope you can take one right now. I encourage you to share what you have learned from your own experience or what you really found helpful in this video. What can you lean into to help you? Please leave a comment below and check out what everyone else is saying. S- see what you can learn.
Let's start a discussion here. If you haven't already done so, please make sure you subscribe and like the video. It really helps to bring the content to more people and ensures you don't miss out on any future videos about coping and recovering from these illnesses. Until next time, make every choice your best choice.
