Are you ready to recover?
This question seems like a silly one, and the answer should be obvious.
If it is, great. Then your mindset will allow you to engage in behaviours that will help you get better and you will likely listen to advice.
After treating patients with Long COVID for 3 years now (and over a decade in other areas), I can tell you that not everybody is ready to get better.
What I’ve observed in most patients is the willingness to accept their current state. And Long COVID is a tricky thing to accept sometimes. It is a vague diagnosis at best. The symptoms are often dismissed by healthcare professionals, sometimes by the families of the people affected. They are also “invisible”, which makes it hard to grasp them in any concrete way. And thus a lot of patients push through their fatigue, drink 5 coffees a day to work despite their brain fog, or consume sugar and salt to keep themselves going.
If we had 2 broken legs, the casts and the pain would remind us every second that we are injured, we need time to heal, and we cannot expect ourselves to perform on the same level as before the injury. Long COVID is more subtle and more sinister.
This is what my patients have to start with – they need to accept they are injured. This is not disaster thinking. Yes — they may be injured now, but if we do enough of the things that allow the body to heal there will not be any other choice but… well, to heal.
This acceptance is about hope — you need to believe you can get better.
It is also about agency — by accepting you need a different approach, a much kinder approach to how you operate on a daily basis, you regain control over the process and you take away the power from the automatic behaviours that are likely hurting you now.
The acceptance is also about our identity. If we allow ourselves to perceive ourselves as people who are injured but we know where we want to go, we allow ourselves to change our programming. We can recognise the behaviours that are counterproductive and we can replace them with ones that will help us. I often call it a monkey brain. This brain does not want to analyse; it wants to be entertained and keep you safe. The problem is, the monkey hasn’t got the message that you are injured. So, it does what it has always done — push through, keep going, look after yourself last.
The case I will describe next does not happen very often, luckily.
I worked with a patient who was referred to us by her doctor about 3 years after her initial infection. She developed Long COVID almost immediately; therefore she spent the three years working on accepting her state in this negative aspect. She believed that this is it, she won’t get better (because this is what all the other health professionals had told her), she became almost entirely house-bound, and her only fun was an online group that she participated in. A shadow of her former life.
Long story short — she got a lot better, not 100% because this is sometimes impossible in a short time, but better nonetheless.
And then she hit the barrier. She started worrying what it would be like if she went back to work, how it would look if she could meet people face to face. Would she be able to leave the house at will? That became scary and overwhelming. Her identity changed.
She became “disabled” in her own eyes. She and I both agreed she had a lot of potential to continue her recovery but she did not feel ready. And she stopped her treatment.
We need to accept some things to get better, but we cannot allow ourselves to be defeated by this acceptance. This is why I feel Long COVID patients are quite different from other chronic conditions. They tend to retain the fighting spirit more often than not. If the fighting spirit can be reined in, then we can do a lot.
Lastly, I remember one comment under one of my posts.
I wrote about pacing, I think. Pacing needs a lot of self-discipline and willingness to make changes in the daily schedule.
The comment read: “but there is so much outside of our control”.
It is true. There is no denying it. But is this a good enough reason not to change anything, not to try?
Nothing changes if nothing changes.
I feel really sorry for the person who left this comment because if we think this way we condemn ourselves to this state of inability to do anything, “it is what it is”, “why try?” and so on.
There are rarely miracles in Long COVID recovery. I never promise 100% recovery to my patients because I just don’t know. But if people follow the advice to the letter, they are very likely to get better.