Seeing Chronic Fatigue Syndrome and Long Covid through a psychologist’s eyes
There’s something inherently destabilising about being diagnosed with what is often referred to as a “medically unexplained” or sometimes even “incurable” illness. We are conditioned to expect a medical diagnosis to offer clarity. Instead, receiving diagnoses of Chronic Fatigue Syndrome or Long Covid can rapidly breed confusion, despair, overwhelm, rage, hopelessness and defeat.
We assume that a diagnosis will be able to answer questions, like what is happening to me? What caused this? Why? And, crucially, what can I do about it? If you have been diagnosed with CFS or Long Covid, you already know that the answers to these questions tend to be vague and inconsistent. They often give rise to many more questions than they answer.
We tend to attribute doctors with god-like powers to test, diagnose and treat us. Depending on your doctor, you may have been told that your condition is something that you will never recover from and that you just need to learn to live with. My sense is that this culture of scepticism and bleakness around CFS and Long Covid may be self-fulfilling. I will post about this in future.
Part of the problem comes from the fact that Chronic Fatigue Syndrome and Long Covid are diagnoses of exclusion. Which basically means that you will only be diagnosed if any and every other possible cause for your symptoms are ruled out. You may have blood tests and other assessments done to rule out medical conditions like HIV, cancer, type 1 diabetes, sleep disorders or neurological conditions.
You may also be assessed to see whether your symptoms can be explained by mental health difficulties like depression, bipolar disorder or post-traumatic stress disorder (PTSD). If your doctor does eventually diagnose you with CFS or Long Covid, it’s a bit like they’re saying “we don’t really understand what’s going on with you, but here’s a label to make it sound like we do!”
Chronic Fatigue Syndrome is labelled a syndrome, because this word, as opposed to a disease, describes a bunch of symptoms that commonly occur together but do not have an identified cause. Long Covid is similarly a syndrome, and is sometimes referred to as post-Covid 19 syndrome. By contrast, a disease generally has an established cause, and often a treatment.
As a psychologist, I’m used to working with people whose difficulties are not straightforwardly understood. In fact, despite the psychiatric profession’s attempts to make it look like mental health difficulties are the result of underlying biological diseases, there is not one psychiatric diagnosis that meets the medical criteria of having identified causes, mechanisms of development and predictable responses to treatment.
I mention this not to suggest that CFS or Long Covid are mental health conditions. I just want to demonstrate that psychologists are well placed to consider difficulties that are not well understood through a standard medical lens. Some psychologists and therapists even go so far as to embrace a “not knowing” stance when working with clients. I appreciate this, because it reminds me to enter any interaction with another person without assuming I understand, or even can necessarily understand what may be causing their difficulties. It seems to me that this kind of humility is especially important in the face of poorly understood syndromes like CFS and Long Covid.
But aside from accepting what we don’t know, what is it that psychologists can offer in trying to decode and unravel the likes of Chronic Fatigue Syndrome and Long Covid? Well, like any good scientist, we like to come up with hypotheses about what might be going on for someone and why. These hypotheses are tentative and in many cases can’t even be “proven”. But, weird as it sounds, it’s my experience that often this doesn’t actually matter as much as we may assume.
What really matters is that the explanation makes some sort of psychological sense to the person experiencing the difficulties. There’s a phrase I read somewhere, that I really like. A good therapist should try and help their client find a story that fits. At root, this is what I think we CFS and Long Covid sufferers are deprived of. An explanation for what is happening to our minds and bodies that is halfway coherent and plausible.
You may raise an eyebrow at the word story, which I get. Presumably you are expecting a little more from a psychologist than just helping you come up with stories about what might be happening to you. In which case, you may prefer other terms like formulation or case conceptualisation, which many psychologists use. They sound a bit more impressive, don’t they? Essentially, though, in starting our recovery, a story that fits is really what we’re after. You can’t change a thing very effectively without first at least trying to understanding it.
The kind of story that resonates for you has a lot to do with the kind of person you are. You may have a strong faith in a god or something else larger than yourself. In which case, this belief may help you make sense of what is happening. Or perhaps, like me, in spite of the limits of the medical establishment, you still long for an explanation for your symptoms rooted in science. Either of these ways of understanding CFS or Long Covid can be helpful. What is key, is that your explanation fits for you.
This is because my lived experience and growing theoretical understanding tells me that CFS and Long Covid exist at the confluence of mind and body. Therefore, the degree to which we can cultivate for ourselves a story that fits when we think about it in our mind, is likely to positively influence our body, and contribute to our healing. Described another way, we are trying to cultivate a sense of coherence, which is a fascinating concept I will post about soon. I will also write about my own best guesses at answers to those burdensome questions I mentioned earlier: what is happening to my mind and body? What caused this? And, of course, what can I do about it?
