The body can get stuck in a state of overreaction or faulty signals, but there is a solution. Our brains can be trained to let go of the symptoms
I was in hell — that is the only way I can describe it. Ripped unceremoniously from the very fabric of my “old life” as a mother, a lecturer, a sports coach, a swimmer, a hiker, a walker.
My family and I lived like that for over a year, without hope. The psychological impact was devastating. The suffering that people experience in such a scenario is difficult to describe.
For some, fatigue can be a dark force that seems to settle in the body — intense, unbearable and unrelenting. You feel a heavy weight that makes it impossible to lift an arm or move a leg without incredible effort. You pay dearly for any such movements through the currency of intense physical pain.
For others, the most dominant symptom may be brain fog, insomnia, respiratory issues or digestive issues. The list seems endless. Many of us experience a constellation of these symptoms, varying in intensity and distribution from person to person, all coupled with intense upheaval to life, and with significant psychological impact.
Something most people with long-Covid have in common is an experience within the medical system that leaves us scratching our heads, with a knot of anxiety growing in our stomachs. It is an experience, at best, of being believed and seen but with no explanation available for our predicament — with a spattering of pharmacology to throw at our range of symptoms.
It is an experience, at worst, of not being seen, not being heard and not being believed — with no help that brings any tangible benefit to our situation. The sense of hopelessness and fear that sets in over time is hard to describe. The sense of being completely alone in the battle with the symptoms; the sense of being beyond help or hope.
A critical turning point in the journey towards recovery for many people starts with understanding what is happening in their bodies. But what is going on with long-Covid?
While all symptoms persisting three months after infection are technically categorised under “long-Covid”, understanding differences in the root cause of symptoms is critical to successful recovery. There are two broad categories which many researchers and medics now point to: symptoms that have a clear structural cause, and those that don’t.
In the first scenario, symptoms may be the direct result of organ damage caused by the virus itself and in this case usually doctors and consultants will have identified the organ damage. The symptoms won’t be “mysterious” in that sense, though no less debilitating.
For the vast majority of those living with long-Covid, however, most of the symptoms cannot be mapped to any structural damage in the body — they are “mysterious”.
Doctors scratch their heads and say: “I can find nothing wrong, I don’t know why you have this pain” (substitute with fatigue/breathing issue/rash/stomach issue and so on). In this second scenario, the symptoms are no less real and debilitating but cannot be attributed definitively to structural damage in the body.
How can someone experience incredibly debilitating symptoms, and there not be a structural cause identified? It turns out it’s not actually mysterious, it is just not known or understood by the vast majority of medical and allied healthcare professionals.
The cause has been identified and discussed in numerous scientific and medical journals and makes perfect sense; compelling research and evidence highlights that the root cause lies in the impact that the Covid virus had on our brain and, in turn, our central nervous systems.
This is something I am researching with, among others, my DCU colleague Kate Sheridan, who was instrumental in helping me analyse and understand my illness experience through a lens of clinical practice. For most of us with long-Covid, the virus catapulted our nervous systems into a state of “fight or flight” (also known as “sympathetic activation”).
Sarahjane Belton playing rugby against Scotland in 2008. Photo: Stephen McCarthy/SPORTSFILE
We are designed to dip in and out of this state multiple times a day, as threats (or perceived threats) pop into our awareness, but to flip back to a “rest and repair state” soon after. When our systems get chronically stuck in a state of “fight or flight”, such as happens with long-Covid and many other mysterious and ill-understood syndromes and illnesses, all sorts of things go wrong. We experience an incredible array of debilitating symptoms including brain fog and fatigue.
When considered from this perspective, long-Covid involves the virus throwing the body’s automatic systems — like heart rate, blood pressure or breathing — out of balance. This is called autonomic dysfunction. At the same time, the nervous system can “rewire” itself in ways that keep symptoms like pain, fatigue or brain fog going even after the infection is gone.
This is a process known as neuroplasticity. In other words, the body gets stuck in a state of overreaction, or faulty signals, which leads to persistent symptoms that can be difficult to resolve.
The problem is most of us, and the medical teams treating us, have been targeting the symptoms rather than the cause — which is why it can feel like we are going nowhere and we remain trapped in the cycle for years.
Once we understand the root cause of the symptoms, however, and start to work with and retrain our brain, rather than combating symptoms, everything changes. Recovery becomes not just a possibility, but a clear and attainable goal. The recovery still requires commitment and tenacity and a tonne of resilience — but at least now you know where you are going and how to get there.
This is how I recovered. Just over three years since contracting the virus, I don’t suggest that I am the finished article, rather I am a work in progress. I developed different tools and strategies to work with my brain and nervous system, to slowly rewire neural circuits that were keeping me trapped in a horrifically painful situation.
I have learned a skill set that is not only renewing my physical health but allowing me to approach and live my life in a far healthier, more balanced and more fulfilling way.
These include meditation and journalling, and paying attention to pain without “resisting” it. I often pair this body awareness with “brain talk” — paying attention to my physical state so that I notice when a “fight or flight” response may be activating (for example, with the onset of a headache) and then reassuring my brain in the moment that there is no danger. If I am out and about I can use tools like breathwork and humming to stimulate the vagus nerve, which carries signals between the brain, heart and digestive system. This helps shift my body back into a “rest and repair” state.
While I still struggle with sensitivity in noisy and busy environments, I have not only recovered but have surpassed my previous physical capacities.
In the process of recovering from long-Covid, I used the skills I learned to rewire a neural circuit of chronic low back pain from an injury that had caused me to retire from international rugby in 2008, and had kept me from being able to run, or surf or climb for 15 years. A bulging, torn, degenerated disc in my lower back is now completely pain free, and I can now do any physical activity I want (providing it isn’t in a noisy or busy environment). This is an incredible gift.
At the heart of this approach is recognising and harnessing the brain’s remarkable capacity for neuroplasticity. Our brains are habit-forming machines and sometimes, those habits can work against us. One of the most striking examples is when the brain learns the habit of pain or other symptoms such as fatigue, digestive issues, sleep disturbance… the list is almost endless.
In these cases, it can continue to generate debilitating pain long after the original injury or illness has healed. Take my experience with back pain. Over time, with gentle persistence, I retrained my brain to understand that the degenerated disc in my lower back did not need to cause me severe pain — that it was safe, it was stable and I could get on with my life.
Eventually, my brain believed me — and released the pain I had carried for more than 15 years. Of course, the process was a lot more difficult to implement with long-Covid, the symptoms had been so severe, but with patience and persistence it has been transformative.
Now I relish every moment of life, and am grateful for the opportunity I have been given — not to reclaim my old life, but to forge a new one.
Sarahjane Belton is an associate professor of physical education at the School of Health and Human Performance at DCU, and in her own time offers support to others recovering from long-Covid