Exulansis - The Gulf of Understanding

An Ongoing Battle for Adequate Treatment and Care: The Impact of Long Covid on Families' by Marianne Lynch.

Audio Version on the Substack App

We have a guest writer this week, Marianne Lynch, whilst we are on semi-hiatus. It is a moving account of the personal and structural issues her family continue to face since their encounter with Covid.

I recently learnt a new word – exulansis.

Exulansis is defined as the tendency to give up trying to talk about an experience because people are unable to relate to it, and although I only learnt this definition recently, it is a feeling that is all too familiar to me and many others who are affected by Long Covid.

First, there is the impossible task of explaining a chronic condition to people who understand illness as something brief and something you can fully recover from.

The exhausting process of educating those who assume you will always be able to get effective treatment (if not cure) for any condition with minimal fuss, about how many medical professionals are unable or unwilling to provide help to those with Long Covid.

Sadly, medical professionals are often not taught about M.E. and other energy-limiting conditions (as discussed in an interview from 2:50 in which Dr Binita Kane, who is a respiratory consultant physician and renowned Long Covid advocate, talks about the omission of any training on M.E. from typical medical training).

Not to mention that the additional work required to convince health professionals of the seriousness of these conditions can easily be far beyond what someone can manage when they are struggling with basic everyday tasks.

Further complications arise from the way Long Covid is often treated as a diagnosis of exclusion, meaning patients who have other conditions can be denied treatment.

However, many patients with energy-limiting conditions can pay an even steeper price because of this lack of knowledge, with medical professionals suggesting patients with severe symptoms should be sectioned and accusing parents of children with Long Covid of fabricating symptoms.

Another situation in which explaining the seriousness of Long Covid can seem like an impossible task is when applying for medical benefits such as Personal Independent Payments (PIP).

Unfortunately, obtaining these benefits is often incredibly difficult for people with a condition that can be confirmed by a simple diagnostic test and who have a wealth of medical evidence regarding the severity of their conditions, and how it impacts their daily life. But the additional complexity of a condition that is invisible, fluctuating, and lacks medical recognition creates a further barrier to accessing vital help.

This lack of understanding is not limited to individuals but seems to be occurring at a policy level, too. The decision to allow individual NHS Integrated Care Boards to reallocate the funding made available for Long Covid treatment has led to many Long Covid clinics closing, and the lack of funding for conditions such as M.E. is well known.

 From 2015–2020, just £6m was committed in funding for ME research through the National Institute for Health and Care Research and UK Research and Innovation, compared with £53m for Parkinson’s disease and £22m for multiple sclerosis.

Then there are the relatively simple measures that could prevent further infection (such as improved ventilation in hospitals and schools) that are not being implemented quickly enough. Perhaps even more troubling are the removal of measures that might have reduced the number of new Long Covid cases e.g. the removal of free lateral flow tests and the legal requirement for employees to tell employers if they test positive for Covid.

It often seems that in their eagerness to consign Covid-19 to the past, many people are overlooking the fact that the virus is still widely present in society and the damage that can be done by repeated infections. As Long Covid expert Ziyad Al-Aly writes:

Reinfection, which is now the dominant type of SARS-CoV-2 infection, is not inconsequential; it can trigger de novo Long Covid or exacerbate its severity.

One public policy that seems to demonstrate a bewildering level of denial around the ongoing risks of Covid infection is the decision by a county in New York to ban masks in public.

Sadly, I am all too familiar with exulansis on a personal level, as it is something I must routinely fight against in an ongoing battle to obtain adequate treatment and care for my beloved elderly father.

My father was a relatively active 89-year-old who could climb the stairs at his home and sit in the garden chatting to friends for over two hours. In December 2022, he suffered a fall, which led to a hospital admission. He contracted Covid in hospital and has suffered horrific fatigue and ongoing problems with cognition and mobility.

He now sleeps for around 20 hours a day, and a brief conversation with one person will exhaust him. However, when Dad went for an assessment to obtain some kind of medical treatment, the doctor insisted there was nothing wrong with him and he needed to join more social groups. Despite multiple requests, the local Long Covid clinic refused to see Dad because he also has heart conditions (and this service has now closed).

Dad used up his life savings paying for the high level of care he now needs. However, both social services and the NHS currently refuse to recognise the risks of reinfection and the debilitating effect a noisy communal environment, such as a care home, would have on my father, leading to an ongoing struggle to obtain funding for Dad to receive a high level of care in his own home.

While exulansis is defined as a tendency to give up trying to talk about an experience, I know that this is an option I cannot take. I am determined to continue fighting for my father and to explain the life-changing impact Covid had for him, in the hope that one day I will be able to make someone with enough power to help my father (and everyone else with Long Covid) understand the devastating impact of this condition.

Marianne Lynch is a science and maths tutor who lives in Ascot with her father (Brian). Since her father’s illness, she has been keenly interested in the treatment of Long Covid and ensuring the medical and social care needs of those with this condition are properly met. She is also curious to explore how the treatment of those with Long Covid illuminates various other issues in society, such as the misunderstanding of energy-limiting conditions and the chronic underfunding of all forms of social care.