I have lived with long Covid for nearly five years. This article aims to explain the impact of long Covid on my brain and argue that the term ‘brain fog’ inadequately describes my experience. Instead, I believe ‘brain damage’ and ‘brain inflammation’ are more accurate and fitting terms.
More than fog: long Covid causes pain, devastating cognitive decline
Brain fog is not merely an uncomfortable, fuzzy feeling. It is a devastating condition, causing both physical and emotional pain. Daily life is a constant struggle with grief. Simple tasks like reading a book for five minutes, following instructions, or walking uphill become excruciatingly painful due to impaired cognitive function. Remembering words or recalling short-term memories triggers intense physical pain, akin to a full-body migraine.
I endure severe neuro-Covid symptoms, characterized by chronic brain inflammation. These symptoms trigger dissociative episodes and suicidal ideation. One day last week, despite intending to eat lunch, I completely forgot, emphasizing the severity of my cognitive decline. I am meticulously documenting these experiences, fearing that I may eventually forget the details entirely.
Limitations of the term ‘brain fog’ for more severe symptoms
Firstly, let’s examine the limitations of ‘brain fog’. This term evokes a sense of mild, temporary confusion – a momentary lapse in concentration, like forgetting why you entered a room. ‘Brain fog’ is widely used in the media, often associated with menopause and other chronic illnesses like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MECFS). While these communities may find the term applicable, it does not accurately reflect the severity of my symptoms.
When I experience what others call ‘brain fog’, my brain feels profoundly dysfunctional, not merely foggy. It feels broken. I attribute this to ‘brain damage’, which I believe is exacerbated by overexertion. Intense fatigue significantly intensifies these cognitive impairments.
I often describe this sensation as akin to forcing two magnets together, their opposing poles creating a powerful repulsion. This accurately reflects the internal struggle within my brain when attempting cognitive tasks. Reading, listening to music, watching television, or even writing becomes incredibly challenging. Letters appear to dance before my eyes, and the only way to alleviate this distressing state is to retreat to a dark, quiet room devoid of any stimulation.
Untreated inflammation is the hidden culprit behind cognitive decline
A study on long Covid reported in The Guardian seems to back up my idea of brain damage.
The article says: “People with unresolved symptoms that had persisted for more than twelve weeks had more significant deficits in performance on tasks involving memory, reasoning and executive function.”
The article concerned a large study of long Covid patients from Summer 2022. I bet you a tenner that the same cohort of people would have even worse symptoms now.
Here comes the science bit. What’s wrong with my brain?
The Brain Inflammation Collaborative says: “Inflammation is a condition where the immune system’s white blood cells and the chemicals they produce accumulate in the body. It can be a reaction to an infection or an injury…whether triggered by any infection or occurring as part of an autoimmune response (or both), brain inflammation can cause an eclectic mix of neurological and psychological symptoms and complications.”
The Brain Inflammation Collaborative investigates the link between brain inflammation and physical and mental health, aiming to develop treatments. They emphasize that brain inflammation increases the risk of infections in long Covid patients. My personal experience with brain inflammation reveals a distressing pattern: overexertion triggers extreme fatigue, leading to depression-like symptoms, anxiety, and even dissociative episodes and suicidal ideation. I also experience debilitating neurological symptoms resembling dementia.
Long Covid inflammation is proven to cause brain damage
A Nature Neuroscience article supports these observations, suggesting that brain inflammation may cause brain damage in long Covid patients. It highlights that ‘brain fog’ (their term, not mine) significantly alters the brains of those with long Covid. This validates my belief that I am experiencing brain damage.
Furthermore, a crucial aspect of brain fog often goes unacknowledged: the constant presence of headaches. Brain damage is fundamentally about forgetting. It’s the terrifying experience of watching your life, memories, and executive function slip away. It manifests as bewildering moments, like realizing you’ve been sitting on the toilet for twenty minutes and then dissociating to escape the overwhelming pain. Brain damage is like a ticking time bomb within our bodies, yet the authorities seem indifferent. The Labour government, the media, and the UKHSA appear unconcerned.
How my brain damage symptoms impair everyday life
A poignant anecdote illustrates this: the Tramlines path leading to the railway station has three gates. One day, I walked up and inexplicably perceived only two, convinced that the middle gate had vanished. This bizarre experience highlights the profound impact of my cognitive impairments.
Recently, a friend visited, a social interaction that violates my strict rest and pacing guidelines, especially after walking my dogs and preparing a meal. However, I craved human connection and desperately needed emotional support. While the visit was initially enjoyable, I now feel overwhelmed, tearful, and utterly exhausted. This bittersweet experience underscores the emotional toll of long Covid and the importance of maintaining detailed records of my symptoms and emotional state.
A recent incident further highlights my cognitive decline: I exited the chemist and completely forgot where I had parked my car, wandering down the wrong street. My daily routine – brushing my teeth, flossing, taking medication, and shaving – provides a sense of normalcy. However, I continually experience frequent lapses in memory, such as completely forgetting to wash my hair this week.
Glimmers of hope: being present and offline improves senses
When my brain becomes overwhelmed, I seek refuge in a dark, quiet room devoid of stimulation. I am currently limiting my phone usage, particularly in the evenings, to see if it improves my cognitive function.
Today, I carried out an experiment. I didn’t look at my phone at all while I was out walking the dogs as I usually do. Although I felt my long Covid aches and pains a lot more, I also heard the birds singing and the traffic sounds a lot more too. My social media use dulls my senses and acts as a de facto painkiller. When I got home, I remembered to prepare my lunch. Although more in pain, I feel more present.
