The mindful way through Chronic Fatigue Syndrome & Long Covid
This post is quite a long one. Still, I wanted to keep it as it is rather than breaking it up, as it touches on a bunch of different ideas that I will be coming back to in future posts. Make sure you take breaks when things start to get too foggy! I’ve dropped some asterisks every now and then at places where you might want a breather.
I’m trying to avoid claiming any one idea or tool as being essential to recovery from Chronic Fatigue Syndrome and Long Covid. This is in the recognition that we are all different, and that these conditions manifest themselves in diverse ways. It follows that we are all likely to benefit from highly personalised approaches to recovery. Allow me one exception then. Because mindfulness has felt like a precondition for my own recovery progress. It also appears to have been a foundation of many other people’s recoveries from CFS and Long Covid. And, in case you’re worrying, it need not involve crossed-legs and burning incense.
Perhaps you already have a regular mindfulness meditation practice. Perhaps you don’t. No doubt you have heard of mindfulness. Maybe you tried it, once or twice, and found that it didn’t work for you. Maybe you concluded that you have the kind of mind that is too incessant and frenetic to be tamed. If this is your experience, this may have something to do with the fact that the purpose of mindfulness is very frequently misunderstood. Despite its ubiquity in recent years, mindfulness is often misrepresented as a means to control the mind.
At least in my understanding, mindfulness is not supposed to rid you of difficult thoughts and feelings. Its goals are far more modest. It is more about noticing those difficult thoughts and feelings, without identifying with them. Yet, mindfulness has offered me far more than just a strategy to cope with CFS and Long Covid.
Paradoxically, by practicing being with my symptoms, mindfulness actually has felt highly soothing to my nervous system, helping it shift very gradually from chronic threat states of fight and flight (sympathetic activation) and shutdown (dorsal vagal activation), to a safe embodied state associated with rest, digest, repair and social engagement (ventral vagal activation). If some of these terms are unfamiliar, no worries, I will post before long about polyvagal theory. What I’m really trying to say here, and I’m not alone, is that the practice of mindfulness can actually be profoundly healing for the body.
Still, you may understandably remain sceptical about the potential for mindfulness to aid you in your CFS or Long Covid recovery. This is no bad thing. John Kabat-Zinn is the person most often credited with popularising mindfulness for health and wellbeing in the west. He points out that holding an evangelical belief that mindfulness is the answer to all your problems is likely to quickly disappoint and deplete motivation. Similarly, if you are certain that mindfulness has nothing to offer you, this is likely to be self-fulfilling. By contrast, a sceptical but open-minded stance is more likely to allow you to benefit from practicing mindfulness.
*
I’m going to try and explain in a little more detail why mindfulness is such a powerful tool in any recovery from CFS and Long Covid. First things first, though, what the frig is it? John Kabat-Zinn defines mindfulness as:
Paying attention in a particular way, on purpose, in the present moment, and non-judgementally.
Meanwhile, the late Buddhist monk Thich Nhat Hanh puts it like this:
Mindfulness refers to keeping one’s consciousness alive to the present reality. It is the miracle by which we master and restore ourselves.
The word mindfulness can sometimes feel a little confusing. So, it may be helpful to know that it is sometimes used synonymously with awareness, consciousness and intimacy. Meanwhile, its antonyms can help clarify our understanding of mindfulness through what it isn’t: mindlessness, absent-mindedness, inattention, unconsciousness, disconnection, dissociation. If you like acronyms, Russ Harris helps us understand mindfulness with flock; attention that is:
Flexible,
Open,
Curious and
Kind.
Mindfulness sounds straightforward, but proves surprisingly difficult. Focusing your awareness on a particular aspect of your present moment experience doesn’t sound so hard, right? But just take a minute to see how absurdly difficult it is to sustain your attention on your inhales and exhales for sixty seconds. If you notice your attention drift somewhere else, that’s okay, just bring it back to the sensation of breathing air in and out.
What happened? Tricky to remember to stay with your breathing for a whole minute right? How about even ten seconds?!
But the connection between paying attention to what you are experiencing now, and now, and now, and recovering from CFS and Long Covid may still be unclear. So, allow me to run through the seven overlapping attitudes that John Kabat-Zinn describes as the pillars of mindfulness practice. I invite you to think about how each one relates to your recovery journey.
*
1. Non-judging. This is impossible, really! Our minds are judging machines. But still, relating to our experiences without judgement is definitely worth attempting, even if we have to remember to do it again, and again, and again. Every sensation, sound, sight, emotion, image and memory we have is instantly tagged by our brain with labels. These labels are as infinite as language itself, but can usually be broadly categorised as good, bad, neutral, safe and threatening.
Something as basic as a pressure in my head can trigger an elaborate, cascading story in my mind. My mind may begin to consider how this sensation could be an early sign of a CFS or Long Covid crash, and therefore poses a major threat to my health, and with it my ability to do the things I care about. This pressure in my head ceases to be just a pressure in my head. Instead, it is imbued by my mind with far-reaching powers to deprive me of my livelihood, my life and my very sense of self.
My autonomic nervous system, being wired to respond to perceived threats and keep me safe, will respond to these alarm signals being broadcast by my brain. It will either mobilise my body to fight or run away from threat, or instead immobilise me if the threat feels too overwhelming. This response will in turn cue all sorts of body sensations, for example, sweating, shaking, heart palpitations, or even more fatigue. In turn, my mind will then judge and create new stories about these sensations – such as that I am now definitely crashing, and perhaps coming down with a virus too. As this feedback loop escalates, my body expends more and more of my finite energy, and the likelihood of a crash actually increases.
The logical conclusion you may understandably derive from this vicious cycle is that it is crucial that you learn to control your thoughts. But, as you will have probably already learned from having a mind of your own, the more we try to supress thoughts, the louder and more repetitive they tend to get. What if, instead, we could practice watching not only our body sensations, but also our mind’s judgements about these sensations from a curious distance? If that sounds difficult, yes, it is! Especially at first. However, it’s also a skill you can practice and get better at. I’ll post before too long about how to unhook from difficult thoughts.
*
2. Patience. Definitely a virtue when it comes to recovery from CFS and Long Covid. Definitely, very, very hard. But actually, describing patience as a virtue makes it sound like a trait we either have or don’t. In reality, like all of these pillars of mindfulness, patience is something we can cultivate through practice. Still, patience feels especially important when it comes to recovery from Chronic Fatigue Syndrome and Long Covid, as the names of these conditions imply.
It’s not that there’s anything wrong with you if you find yourself asking when will I recover? Or even, will I recover? It’s just that your recovery may be better served by focusing your attention and energy on what you can do, here and now, to aid your recovery. As your patience enables you to be more consistent in doing what matters for your recovery, you are more likely to observe some gradual improvements in your health. As you gain a little momentum, patience may become slightly easier!
John Kabat-Zinn reminds us that patience is a form of wisdom. Just as a butterfly emerges from its chrysalis only when it is ready, so must we allow our body to do what it needs to do, for as long as it needs to heal. Granted, the capitalist culture of competition and efficiency that we find ourselves living in does not create the most fertile environment for the cultivation of patience!
*
3. Beginner’s mind. We tend to allow our experience of our bodies and the world around us be shaped what we already know from previous experience. It makes sense that humans evolved this capacity to predict the future based on our past. It wouldn’t be very efficient if every time we saw a friend or family member we were unsure who they were and whether they posed a threat to us!
Still, sometimes this mechanism prevents us from being really present, here and now. In any given situation we encounter, our minds automatically mine our memories for similar situations from the past. As a result, we end up spending a lot of time making assumptions about what we think we know about what is right in front of us, or even inside of us. In many ways, we spend our lives being anywhere but here and now.
My experience is that this process can cause major issues for us if we have CFS or Long Covid. Think back to that vicious cycle I mentioned above, where the way I responded to a pressure in my head may could led to a major escalation of symptoms. Well, this is likely to be due in part to my inability to experience that sensation with a beginner’s mind. My mind has automatically tagged this sensation as dangerous, perhaps drawing on previous experiences in which I had a head pressure and subsequently crashed. In psychological terms, this process is called predictive coding, and there has been some interesting research suggesting that it may be important in what makes CFS and Long Covid chronic.
By the same token, our tendency to pre-emptively think we know the world in front of us, may prevent us from trying out things that may help our recovery. If, for example, we have already had a negative experience with mindfulness, or yoga, or tai chi, we may not see the point in giving it a go now. Or, perhaps we have never tried any talking therapy, but have decided based on cumulative interactions and experiences that it is unlikely to help someone with a chronic health problem.
*
4. Trust. For many of us who live with CFS or Long Covid, part of what made us unwell were habits of pushing through, people pleasing, self-sacrifice and subordinating our own needs. We may have actually learned not to listen to our body. As such, we did not take seriously the successive distress calls sent to our brains by our bodies in the form of early signs and symptoms, such as repeated viral infections.
Unlearning these patterns by building a core trust in the wisdom of our body is crucial to recovery. To borrow Risa Kaparo’s language, we can think of this process as awakening somatic intelligence. The capacity to listen to our body and act accordingly is essential in arriving at more sustainable ways of meeting the world.
In practice, cultivating trust in our body’s natural intelligence allows us to stop activities before they become draining, and to set boundaries in interactions with other people before they overwhelm us. Developing trust in the messages our body sends us allows us to follow our own personal path to recovery. We can focus on what feels safe and helpful to us, and not simply what someone else suggests.
*
5. Non-striving. This is particularly hard for many of us struggling with CFS and Long Covid. The trait of relentlessly striving, and measuring our self-worth by our achievements appears to be common among our tribe. Which makes sense, if you think about how exhausting these behaviours can become when left unchecked.
When we approach our recovery from a striving mindset, we can easily become fixated with doing everything we possibly can for our recovery, all the time! But this rapidly becomes counter-productive, as we pressure ourselves to get recovery right, and to recover in record time. We may ironically burn ourselves out even further. Meanwhile, John Kabat-Zinn reminds us that:
Meditation is different from all other human activities. Although it takes a lot of work and energy of a certain kind, ultimately meditation is a non-doing.
Things get a little paradoxical here, as when we set out to reduce our symptoms, or recover, then we are sort of telling our body that where we are right now is not okay. This may activate threat-based states in the autonomic nervous system which are extremely draining of our energy. When these states become chronic, they are toxic for our health. By contrast, if we allow ourselves to be exactly where we are right now, symptoms and all, we are actually making it easier for our body to gradually move into a parasympathetic, rest and repair state.
If you are experiencing discomfort, pain or overwhelming fatigue, it is totally understandable that you will strive to escape these experiences. However, practicing just noticing these feelings is likely to be far more helpful for you than existing in a state of striving, denial and struggle. I will write more in future about how we may go about dropping the struggle.
*
6. Acceptance. This is not the same as resignation. You may have an intense migraine. You probably would prefer not to. That is okay. However, trying to accept the reality of your migraine here and now is likely to be more helpful than resisting this reality.
Your current life situation many be incredibly painful and difficult. I spent countless days in recent times in silent rage at my predicament. You too will likely be experiencing deep anger, grief, denial and shame, among other emotions. This is okay. It does not mean you are weak, or failing, just human.
As you experience physical and emotional pain, allowing those feelings to just be there beats adding further layers of suffering as you berate and shame yourself for having these feelings in the first place. As John Kabat-Zinn tells us:
We may be so busy denying and forcing and struggling that we have little energy left for healing and growing, and what little we have may be dissipated by our lack of awareness and intentionality.
If the word acceptance grates, and you struggle to even begin to want to accept your condition, there is a more pragmatic alternative. Acceptance and Commitment Therapy (ACT) is a mindfulness-based therapy which often substitutes the word acceptance with willingness. Many, many times as I lay on my yoga mat, struggling to comprehend the brutal reality of a relapse in symptoms, I would tell myself something like the following. I don’t have to like this situation right now, but can I be willing to have it. This willingness to have what we have is based in the knowledge that denying this reality is likely to create further suffering. I will write more in future about acceptance, a.k.a. willingness.
*
7. Letting go. Much like acceptance and non-striving, letting go is exceptionally hard. But it can help us respond to our difficulties from a more grounded, intentional place. My mind repeatedly gets hooked by particularly frustrating thoughts, along the lines that if only I had done x differently in the past, everything would be easier now. Or, if only I had more money, or a miracle cure, or more friends, things wouldn’t feel so grim. Ultimately, holding on to these thoughts tends to be unfruitful and exhausting.
By contrast, letting these thoughts come and go in their own good time, can help us distance from them. In turn, this can make it easier for our nervous system to become less triggered by the constant chatter of our minds. As I mentioned above, I’ll write more about how we can learn to unhook from difficult thoughts.
There’s a quote I like, even though it appears to have been misattributed to the ancient Chinese Taoist philosopher, Lao Tzu:
When I let go of what I am, I become what I might be.
In many ways, recovery from CFS and Long Covid is itself an incredibly gradual process of letting go. People often talk about fighting fatigue or breaking free from it. My experience, though, has been different. It has been a journey of letting go of different parts of myself that no longer serve me, so that I may become something new. Not unlike caterpillars and butterflies.
*
You may have noticed that none of these attitudes require that you sit cross-legged with your eyes closes. It may be that some kind of regular formal practice proves very useful to you. Doing this may be helpful in cultivating these attributes so that they are more accessible to you in your everyday life.
Depending on your particular constellation of symptoms and what feels comfortable for you, your practice may not look much like meditation. Obvious though it may seem, it took me a while to realise that I didn’t need to sit upright, which was exhausting. So, I began to meditate lying down instead. For a while there, I spent much of my day lying on a yoga mat. Initially I could only manage short moments of trying to be present to my moment-by-moment experience. Over time, though, as I began to experience pockets of relative peace and calm and even brief let-ups in symptoms, I naturally found myself doing longer meditative rests.
For several months, 45 minutes at a time, four times a day, I would meditate lying on a mat, head on a pillow, yoga bolster beneath my knees. This practice created some much needed structure in my day. These meditation sessions served as consistent islands of conscious rest, buffering whatever modest activity I felt up to managing that day. The more I practiced, the easier – or perhaps less hard – it became to be a little less reactive outside of those periods of formal practice. Ultimately those structured practices made it clearer and clearer to me that mindfulness isn’t anything you have to do, just a way of learning how to be.
