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Show Notes
Living with ME/CFS, Fibromyalgia, Long Covid, POTS, post-viral fatigue syndrome or related chronic illness can make motivation feel almost impossible.
Not because you are lazy.
Not because you are weak.
And not because you simply need more discipline.
When symptoms, fear of flare-ups, setbacks, pain, exhaustion and disappointment become part of everyday life, even small steps can start to feel overwhelming.
In this video, I explore why motivation often changes during chronic illness recovery — especially when people move from desperation into partial improvement — and why relying only on “pushing through” or fear of staying sick can become exhausting.
We’ll look at the deeper drivers of motivation, why recovery goals need to feel emotionally meaningful but also realistic, and how small positive experiences can help people stay engaged without forcing themselves beyond their limits. This video is for anyone who feels stuck, flat, unmotivated, discouraged, or unsure how to keep moving forward in recovery.
Timestamps
00:00 Why Motivation Matters For Recovery from ME/CFS/Long-Covid/PVFS/Fibromyalgia/POTS
01:24 Two Main Drivers of Recovery Motivation
04:14 Problems With Different Motivating Forces
04:55 Finding a Motivation Solution
06:10 Five Motivation Strategies for Chronic Illness Recovery
08:44 Getting Started with Chronic Illness Recovery Motivation
10:04 Staying Motivated for Full Recovery from Chronic Illness in the Long Term
10:51 Questions
Links
Here is a link to the ANS REWIRE program.
Transcript
Living with a chronic illness can be incredibly challenging, making even the simplest tasks feel daunting. And today we're exploring how to stay motivated and take proactive steps towards your recovery, even when discipline feels like a bit out of reach. So motivation is key if we want to find ways of engaging in life for some joy.
It's key for our ability to cope. It's key to help us move forward with our recovery. But when we're fatigued or beaten down by pain or other symptoms, and trying to summon up any kind of motivation can sometimes feel pretty tough, can't it? Especially when we're fearful that doing something is going to trigger symptoms.
So in this video, I'm going to share with you my experience with motivation that I gained in over a decade of helping people seeking recovery, and what I learned that changed my mind regarding the best way to tap into motivation. So we're going to discuss two key drivers, as well as five strategies for you to find it easier to be more motivated.
For those of you new to the channel, I'm Dan Neuffer. I'm the author of CFS Unraveled, and the creator of the ANS Rewire recovery program for people experiencing fibromyalgia, post-viral fatigue syndrome, ME/CFS, POTS, and related illnesses All right, let's get into it. So one of the interesting things about my own experience, as well as the experience of many other people, is that their turning point occurred after they hit their low.
Interesting, right? Why do things change after they get so bad, often unbearably bad, intolerably bad? And if you listen to people, you sometimes hear them reach a real low, like a dark place, and say, "I couldn't live like this anymore." All that sounds terrible, of course, so how can it possibly trigger a turning point in their recovery?
Well, the reason is because the pain of the situation was driving up their motivation to take action against all odds, through any kind of discomfort. Now, let me be clear. I'm not saying that people are sick because they're not motivated or they haven't tried hard enough. Of course, I get that there's no simple fix for this illness.
But that's it. Because there is no simple fix, we need to do so much more to recover, and we need to take persistent and consistent action, like I discussed in a previous video. So when we are in enough pain, and I don't mean physical pain, but rather emotional pain, it can be a powerful motivator for us to take action to create change.
Think about it. You've seen this many times, like when people are, are in a bad relationship or a toxic workplace. It often goes on for years and years and years until it gets so bad they can't take it anymore, and then they make a change. The second motivator here is pleasure. So the pleasure of being in a relationship can be a strong motivator, and it can be strong enough for people to overcome the potential pain of rejection, right?
The pleasure of winning a sporting event can be more than the pain of doing the training. Potential pleasure motivates us to do things and push through difficulties. But which motivator is stronger? Which one should you focus on? Now, outside of the context of chronic illness, say in sport or business or other life goals, some people out there suggest that pain is a stronger motivator than pleasure.
And indeed, this was my view when I started coaching people over a decade ago. As I already mentioned, I kept seeing this in people's recovery journey, including my own. You know, sticking to a diet, taking pills every day, doing certain physical activities, not doing other activities. It all feels a bit too hard sometimes.
I couldn't see enough evidence that it was helpful, so I really struggled to persist. But when the pain became so intolerable, when living with this illness as best as I can no longer seemed a feasible option, I was able to overcome any resistance and stay motivated to follow through. It was probably more desperation than motivation when I think about it.
But I noticed three problems. When we are suffering, focusing on the suffering, connecting with our pain for motivation, that can be really unhelpful. It can lead to more pain than we can cope with. The second thing is that motivation like that often doesn't last, because as we progress with our recovery, the pain reduces.
And third but not last is that sometimes it just didn't work. So what about focusing on pleasure as a motivator? Well, this usually meant connecting to activities that we would like to do. But again, there are different problems associated with that. The potential pleasure activity often seems unrealistic and out of reach.
Pleasure activity is not a strong enough motivating force. Okay, so we can see there is no perfect solution here. Both motivators have their shortcomings or drawbacks. But what I realized was that whilst avoiding pain right now is clearly a bigger motivator than seeking pleasure in the future, we really need to seek to tap into both motivating forces.
And this is especially true as we progress with our recovery, because I found that people who focus on the pleasure, the go-to motivation, they seem to be much better at maintaining their motivation than people who focus exclusively on the pain motivation. And I think the reason for this is because focusing on the pain is exhausting, for one, and it wears us out.
And as we progress and our pain reduces and becomes bearable, our motivation tends to fizzle. Having a really powerful, emotional go-to motivation, something that we're really passionate about to re-engage, it really helps us stay on track and stay motivated. My mistake over the years was underestimating the role of the pleasure motivation, probably because of my own experience, which was so pain-dominated.
Sample size of one, not very helpful, right? But having supported hundreds and hundreds of people with their recovery over the last decade, it's really changed my mind about all this. So here are five tips to help you start to improve your motivation. Number one, as discussed, embrace both current pain and future pleasure as motivation.
Number two, scale your pleasure motivation. Making your goal to be fully well and doing triathlons around the world is unlikely to be motivating for long, as it may feel unrealistic or too far out of reach. So if you're deeply motivated by such a goal, great, keep it, but also make smaller goals that feel more within reach.
This might be to go for a 20-minute walk, to be able to do a 10-minute jog, to go for a gentle bike ride, and as well as goals for a middle ground, such as to do some training sessions with a friend for 30 to 60 minutes without pushing too hard, to be able to go on small trips. Number three, focus on gaining experiences that you can control.
We cannot force ourselves to be able to do a level of activity without experiencing post-exertional malaise or flare-ups, you know, without experiencing setbacks. But we can try to expose ourselves to activities, and as long as we focus on making that positive, it can help with our motivation. So for example, we can go and watch the sport we want to participate in, or we can try and experience the feeling of that sport in a small way, by playing a limited way for a few minutes.
It's not the real thing, but you get that feeling of maybe holding the racket or being in the water or whatever. The key here is keeping it positive. You know, like Ah, that feels good. Not, I can never do this again. I want to do it properly, or, or something like that. Number four, celebrate every victory.
You did something? Great. You enjoyed the moment? Fantastic. Maybe small, but it's something. Appreciate it, celebrate it. Now get that dopamine going. Getting positive feedback is really key to maintaining motivation. Number five, social support. Now either from chronic illness peers or peers from the activities you're seeking, such as fellow sportsmen, friends, or family, seek it.
Now we have to be a bit careful here, because the social support has to be, one, positive, so you don't want other people dragging you down, bombarding you with their negative beliefs or experiences, or even their pity and emotional baggage. And two, it has to be understanding people who get that your illness is real and know what your limitations are.
Because people who don't will often end up pushing you too far and beyond your limits, causing both physical and emotional upset. Now here's my final message to you: you need to be motivated enough to become motivated. That's right, it takes a bit of effort and action. Now ask yourself, well, what is this lack of motivation costing you?
Now take a moment to write it down. What is it costing you in regards to your everyday life? What is it costing you in regards to your recovery progress? Once you decide to address your motivation, start writing these things down. One, what is the most painful part of your experience with illness that you just no longer want to tolerate?
Two, what are three things that would really motivate you that you would love to be doing? Three, write down three levels for each positive motivation. One, if you were just a little bit better, two, if you were a lot better, and three, if you were fully well. Number four, start a diary where you record any positive changes to your health and any positive experiences, such as those in line with your pleasure goals.
And number five, write a list of potential people or groups that can support you with your goals and reach out to them, keeping it clear that you don't seek hype or pressure, just a bit of gentle encouragement. If you found this video helpful, please remember to give the video a thumbs up and subscribe if you haven't already done so.
This really helps more people to see the videos. Remember that motivation is personal and fluid. It's about finding what works best for you in your journey towards health and wellbeing, and realize it changes over time. So it's not set and forget strategy, especially as you make progress with your recovery.
In fact, that's often the biggest risk for people. They make a lot of progress, and then they lose their motivation and stop persisting for fuller and more robust recovery, which can lead to stagnation and often setbacks. I mostly see this in a 60 to 80% functioning space, but sometimes sooner. So keep working on your motivation.
Keep striving for fuller recovery. Don't put your life off until you're fully recovered. Enjoy what you can when you can, but stay on track. Let me ask you, how has your motivation changed over time? What's helped you personally to stay motivated? Now please leave some comments below with answers. Let's see if we can get some insights going between us and share some ideas.
Until next time, remember to make every choice your best choice
