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Show Notes
Many people with ME/CFS, Long COVID, Fibromyalgia, POTS and related chronic illnesses have been told they're weak, lazy, or simply not trying hard enough.
But after years of illness and more than a decade of supporting others, I've come to believe there may be a different problem entirely. Why do so many people continue pushing through debilitating symptoms?
Why do they keep trying to meet responsibilities, support others, and carry on long after their bodies are asking them to stop?
In this podcast, I share a personal experience that led me to reflect on an often-overlooked pattern I see in people living with chronic illness. We explore the push-crash cycle, the pressure of the "shoulds" and "musts" that many of us carry, and why doing less is not always the same as truly resting. We'll also discuss why rest is about more than inactivity, how guilt and self-pressure can make it difficult to recover, and why learning to be kinder to ourselves may be harder than it sounds.
If you've experienced ME/CFS (Chronic Fatigue Syndrome), Long COVID, Fibromyalgia, POTS, PVFS or a related chronic illness, I'd love to hear your perspective. Has this illness taught you to slow down and rest, or have you found yourself pushing through for far longer than you should have?
Timestamps
00:00 A Common Misconception About ME/CFS/Chronic Fatigue Syndrome/Long Covid, Fibromyalgia and POTS
00:53 What ME/CFS, Long COVID, POTS & Fibromyalgia Taught Me
01:42 When Mental Toughness Blocks Recovery from ME/CFS/LC/POTS/Fibro
03:45 Why Resting Isn't the Same as Recovery
04:43 The Real Problem with ME/CFS, Long COVID, Fibromyalgia & POTS
Links
Here is a link to the ANS REWIRE program.
Transcript
After years of illness, I was only able to work part-time in my previous career. I was in a meeting with someone, someone who didn't really know me very well, and by chance the topic of chronic fatigue syndrome came up. Of course, they didn't know that I had been ill with ME/CFS as well as pots and fibromyalgia for years, because like most people, I was good at covering it up and they didn't realize that I only worked intermittently.
This guy, he went on to say that it's not a real illness. People with this are just weak. They don't have anything wrong with them. I'll have to admit, I was a bit shell-shocked and my response was interesting. I said nothing. It just didn't seem worth opening that can of worms and frankly, I didn't have the energy for it.
But I always remember that experience, and it often makes me think, you see in my experience over the last decade of supporting people in the vast majority of cases, I would suggest to you that the opposite is actually true. People with this illness, they tend to be super tough. I am continuously impressed at how people handle their adversity.
In fact, I would suggest that the people that experienced this illness are absolutely in the top quartile of all people. Maybe the top 10% of all people in terms of how tough they are and how well they handle adversity. But if you think I'm flattering you, or please think again. It's not a compliment, it's actually kind of a criticism.
I don’t know if you ever noticed this, if you've been watching the recovery interviews, how people often hit like rock bottom where they say, I just can't live with this illness anymore. You know, on the verge of being suicidal. And then they start to turn things around and what do you think is going on here?
I think what's happening is that people keep soldiering on pushing themselves and they keep going through that push and crash cycle way too long, years, decades even. And then when it all gets too much, they finally change their way. They start to let go of all the things they have to do. They're let go of the shoulds and the musts. They let go even of their responsibilities.
They let go of prioritizing others over themselves. Instead, they finally become single-minded, really focused, and they become prepared to do anything to get better. So I'm not saying that until that moment they didn't try hard to recover. Not at all. Of course, we all try hard, don't we? But what I'm saying is they try too hard to keep everything else going.
You know, we always complain about how other people, friends, family, even healthcare professionals, don't believe us about our symptoms or appreciate how bad the illness is. But in, in my experience, we are actually the worst culprits ourselves. Most of us don't give ourselves the break we deserve when suffering such debilitating and pervasive illness. We just soldier on.
So not only are most of us get the illness mentally tough instead of being mentally weak, but I would say it's our biggest Achilles heel because it's only when we get so worn down and start to feel mentally weak that we change how we engage with our lives and truly give ourselves the rest we need to start the recovery process.
If you're saying, well, I've been resting for years and hasn't made a difference, I get you. Of course most of us feel like that, but besides the fact that we need to do a lot more than solely rest to recover, the fact is that most of us actually never rest. We just do less, but often we're still doing as much as we can now.
Rest is about doing less than we can. Rest is also about not just what we do, but it's about how we feel. So even when you do nothing, that doesn't mean you're resting. Now resting is supposed to feel good. I know that when I was doing nothing, I felt terrible. Or in all my years of illness, like I was wasting my time.
I felt despondent, frustrated, and you know, angry thinking about what I should be doing, what I wanted to be doing. There was nothing restful about my experience of doing nothing. So are people experiencing this illness weak-minded? Unfortunately not. I'd suggest we should try to be a little less tough.
Let's try to be a little kinder to ourselves, a little more compassionate. Let's lose the shoulds and musts and I can do it anyway. I can overcome anything. Let's lose that attitude and just take a step back and get some rest. Now, what do you think? Has your time with this illness been restful to feel tough or weak minded?
And has that changed over time? I know I certainly felt tough for years pushing on. Until I felt like there was nothing left of me. Eventually, I really did feel weak minded and frankly, it took a little while after I recovered for me to feel myself again. I'd love to hear what you think, what's your experience been?
I'll leave a comment below and if you haven't already subscribed, please subscribe. If you want to see more content like this, click the notification button and of course, leave a like so that more people can find this video. I look forward to your comments.
