Long-haul COVID and mindfulness

I have been suffering from long-haul COVID for more than a year now. The best thing that ever happened to me?––of course not. But still, from some perspectives, I may say that I am grateful for the experience. And without mindfulness, I probably wouldn’t be able to say that. But first things first.

How it started and how it feels

One and a half years ago, I considered myself healthy, sporty, smart, and successful. A proud father of three kids, working on sustainable energy technology solutions, I loved to do sports together with friends in the mountains. I followed a healthy diet, but still would allow myself to have some beer or chocolate occasionally. And luckily, mindfulness practices entered my life about five years earlier.

The first symptoms I remember were occasional serious exhaustion, along with concentration and memory disorders. I only understood the severity when one day I experienced “brain fog” for the first time––I noticed my attention level would not suffice for driving and I realized I was a threat to other road users. I decided to put my car away for a while and looked for medical help. It turned out that I have been suffering from long COVID or chronic fatigue syndrome (CFS), and my condition would only improve slowly––if at all.

A chronic illness means not only suffering from the symptoms, but also from many side effects, like being unable to work, being of limited help to the household, being unable to pursue your favorite activities and ultimately having reduced social contacts. Writing this, I notice that my youngest daughter probably doesn’t remember her father as anything other than being sick. All that is affecting your mind in a potentially unhealthy way. Besides being frustrated and anxious about the future, I feel this is also questioning my identity.

As an additional difficulty, you have to face the lack of proper treatment from the medical professionals. In fact, any treatment for CFS is still under research, and mostly not yet accepted by conventional medicine; thus, financial support is refused by insurance companies. On top of that, you encounter doctors denying the existence of any such illness; you hear sentences like “just go and do some weight lifting.”So you finally read yourself into the subject and actively seek some of the rare expert medical specialists who are hopelessly overbooked.

CFS comes with many symptoms, but I have been experiencing brain fog as the main obstacle impeding a usual life. It seems to come in two flavors: either my mind feels cluttered with lots of garbage, or it is just totally empty. The former may result more from emotional exhaustion and the latter from physical exhaustion. In both cases, it can be difficult to answer simple questions.

Noteworthy is also a more subtle aspect of CFS, relating to post exertional malaise (PEM), which is the worsening of symptoms following even minor physical or mental exertion, lasting for days, weeks, or even more. This is terrible by itself, but so too is its mitigation: activity management by pacing. This is considered a solution for PEM symptoms, but it means forbidding yourself an activity which actually might feel right in that very moment––but you just must not do it because of the terrible consequences. This can become like a constantly applied handbrake in your life, creating a mindset which unfortunately also works against ease and cheerfulness.

Enough whining? Well, it is important to face the situation as it is, in particular to fully accept all related emotions, no matter how scary or painful they are. But it is equally important to make the best of the situation. The less promising it is, the more our actual well-being depends on our mind, our attitudes, our thoughts. This is where mindfulness can be a true game changer.

Mindfulness––a game changer?

Mindfulness, in short, is the practice of purposely bringing one's attention to the present-moment experience without evaluation. Key consequences of such a continued practice are, among others, the ability to let go of harmful thoughts and attitudes, re-aligning the subjective perspective towards greater well-being and a healthier relationship with all kinds of emotions. As I am writing these lines, I am losing all my concentration capabilities. I have to take a break and come back another day.

Coming back a few days later, I was told in the meantime that I would lose my job. What the hell?! I’m thinking about my continuous hard work, in particular during the pandemic. How could I possibly find another job now with such a health condition? Words of frustration. Let’s use some mindfulness to deal with it. Breathing. Accepting emotions and also the resistance against them. Recognizing vicious thoughts and letting them go without following them. Curious about what life brings next. All right, back to topic.

Let me come back to the early times of my sickness, which is now more than a year ago. I was exhausted and my mind was restless––too restless to meditate. So I did a lot of relaxation techniques like autogenous training and body scans. After a few months, I wanted to give meditation a try again, and looked for instructions for an easier entry. Luckily I came across the free app Medito, which has been a truly valuable companion since.

How can mindfulness help in this particular situation? In fact, in numerous ways. Let’s start with thoughts. It is very natural in such a situation to be worried about the future, to get caught in a vicious circle of negative thoughts and painful emotions. Mindfulness itself is already breaking up this vicious circle. By directing one’s attention to the present-moment experience, negative thoughts get less attention, and associated painful emotions are reduced.

To deal with brain fog, I rely mostly on two routines. First, I try to avoid both physical and mental exertion and to take a nap each day around lunchtime. Second, I try to notice early signs of upcoming brain fog, be it cluttering in my mind or unusual emotional responses. In such cases, it means it is high time to use mindfulness to let go of expectations, relax, and focus on the present-moment experience. Following these routines for quite a while now, I feel more confident and dare to face potentially difficult situations again.

Mindfulness to ease difficult situations

A very important point is the subjective self-evaluation of your situation. Usually, this emerges from a comparison to your life before the supposedly unlucky incident, or when imagining your hypothetical life without the sickness. With mindfulness, we can see through this self-evaluation mechanism and practice assessing our situation differently. One way to do so is to acknowledge having a life at all, hence practicing gratitude by remembering mortality and the preciousness of each moment of the life that is lent to us. Another way is to draw your attention to positive aspects of the situation.

Positive aspects? Indeed I learned to find some of those and acknowledge them. I am really lucky that I have almost no pain. I don’t have enough energy to pursue usual occupations, so I have a lot of time available. While this, of course, is an issue, I also try to see it as a resource, allowing me to spend more time on meditation and with my family. I also acknowledge how the lack of energy forced me to learn self-management of my own energy, increasing my body awareness. And finally I might say that this poor situation actually taught me some optimism.

Some words on self-esteem. This is subtle, as it is not perceived clearly at a conscious level, and it may slowly decrease in a state of chronic illness and idleness. So, at some point, you may suffer from reduced self-esteem before actually realizing it. How can mindfulness help? Well, first watch your thoughts, emotions, and also your behavior, and then conclude by observing your self-esteem by bringing it to a conscious level.

If you are suffering from reduced self-esteem, recall that this relates to an evaluation tied closely to old thoughts and self-expectations. Try to let go of them, allow yourself to take on new perspectives. And again bring your attention to the present moment, away from evaluations and, therefore, also away from low self-esteem. Then, somehow, you may transform your identity. Well, actually we always do this, no matter the circumstances, but usually the process is not disruptive so we don’t notice. Don’t be afraid of your new identity. It’s not bad as long as you don’t name it so.

You might say that all this sounds like nothing more than alleviating the pain, perhaps you can’t see a truly positive aspect of living with the condition. Well, some aspects are, in fact, positive, like having more time for my family. But there is another major positive aspect: this challenging situation actually forced me to practice mindfulness because I soon realized I would be rather miserable without it. It kind of felt like my only option. Now I am grateful for the increased mindfulness in my life and try not to judge the circumstances that have led to it.

Practicing mindfulness never ends. So I’ve written these lines mostly as instructions for myself. Let me conclude with a quote: “Never let a good crisis go to waste,” said Winston Churchill. What a hard truth, but yeah, let’s try to see negative experiences as an opportunity, a chance for us to grow.