果冻影院

Lucy* used to be known fondly as the 鈥渋ron lady鈥� by colleagues at work. In her mid-50s and still the main breadwinner for her family, she had always thought of herself as strong, energetic, and indestructible 鈥� but not any more.

Since contracting COVID-19 in March 2020, Lucy told us she had been struggling with relentless fatigue, joint pain, breathlessness, brain fog and sensory dysfunction. But worse than any single symptom is how this leaves her feeling about her own identity. She said she found herself unrecognisable, a shadow of the person she used to be:

"This isn鈥檛 who I am 鈥� I don鈥檛 recognise myself. I panic if I get on the Tube and there鈥檚 no seat. It鈥檚 a very strange feeling, like not being in your own body. My fear is I鈥檒l never really get better, and that I鈥檓 always going to be at 70% of my former self.

In November 2020, Lucy was diagnosed with long COVID, a condition encompassing many symptoms that last far beyond the acute stage of COVID infection 鈥� at least 12 weeks but often far longer. In our interviews, Lucy described struggling not only with great physical suffering but an overwhelming sense of losing control over her life:

鈥�I was crying and crying 鈥� it was absolutely heartbreaking. I just could not get over the fact I wasn鈥檛 getting better 鈥� I鈥檓 not usually a crier but the tears, my God 鈥� the physical illness made me feel so tearful, as well as the desperate nature of feeling so ill for so long.

In his 1946 book, Man鈥檚 Search for Meaning, the psychiatrist and Holocaust survivor Viktor Frankl wrote: 鈥淟ife is never made unbearable by circumstances, only by lack of meaning and purpose.鈥� These words ring true in the story of Lucy, whose illness has brought her face to face with existential crisis as she confronts the realisation that her once rich and meaningful life may have slipped away, leaving her uncertain and fearful about what lies ahead.

I half feel myself shutting down 鈥� almost like: 鈥極h, my God, I鈥檓 counting the years till I can stop.鈥� You know, when can I retire? It鈥檚 like I can鈥檛 picture myself any more in the same way [that I used to], on an upward trajectory.

Are existential crises common?

Lucy鈥檚 story is by no means an isolated case. Over an 18-month period from October 2021, we conducted three rounds of interviews with 80 people from diverse age groups, geographical locations and socioeconomic backgrounds throughout the UK. All had self-identified as having persistent COVID symptoms through nationally and regionally representative cohort studies that track the lives and health of people over time.

Strikingly, while sharing their experiences of living with these symptoms, more than half described a profound and, to them, often inexplicable anguish. This emerged as they were forced to question their purpose, even their very existence, in the face of long COVID.

According to past research, doctors and nurses in different areas of healthcare often describe supporting their patients鈥� existential needs 鈥� the psychological dimension of illness spanning feelings of isolation, alienation, emptiness and being abandoned 鈥� as one of their greatest care challenges.

Yet there still appears to be only a limited understanding of the way that people experience full-on existential crisis 鈥� including among those family members and friends closest to them. This implies a lack of knowledge of the best ways to identify and support people enduring such harrowing periods in their life.

To make matters harder, diseases such as myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) and long COVID are viewed with scepticism in some quarters. A reluctance to acknowledge these crippling health issues can potentially hinder both diagnosis and support for sufferers 鈥� and exacerbate their sense of isolation.

While our interviewees may not have explicitly labelled their experiences as 鈥渆xistential鈥�, the question of the nature of who they are lies at the heart of many of their narratives. Emily, who was only 31, expressed her fear of disconnection from both her past and future as she confronted the unknown struggles ahead:

鈥�It became very lonely to be in that position and to not understand when, or if, you鈥檙e ever going to get better. I try not to think that way, but I do worry that this will never go 鈥� Planning for the future, it鈥檚 a big thought thinking: 鈥楥an I do it with this kind of pain 鈥� can I or can I not?鈥�

What seems remarkable is that the existential concerns shared with us transcended age, ethnicity, health and wealth, affecting individuals from all walks of life. In this, our study echoes previous research into people with chronic, acute and terminal illnesses, as well as of older people grappling with 鈥渇eeling forgotten鈥� and fading away, and of teenagers and middle-age individuals during major life-stage transitions.

Existential crises can also centre around experiences such as a romantic break-up or bereavement, or even the global threats posed by climate change. At the core of all these experiences are a profound sense of losing something important and the heavy load of not knowing what will happen.

Losing your identity

For most of our interviewees, living with long COVID caused significant disruption to their daily routines. The aftermath of their infection typically resulted in a wide range of symptoms affecting their breathing, heart and cognitive function. These symptoms often overlapped, changed over time, and made it challenging to return to activities that were once core to their sense of self.

Hazeem, a British Pakistani in his mid-30s, expressed frustration about being too fatigued to fulfil his role as a father during a crucial stage of his young son鈥檚 growth:

鈥�I feel bad for my little son because he鈥檚 five and he鈥檚 just started school this year, and sometimes I can鈥檛 take him to his swimming now if I don鈥檛 feel up to it, or take him to his football classes or gymnastics 鈥� I feel like as a father figure, it鈥檚 my duty but sometimes my wife has to do it now.

Hazeem appeared deeply concerned about the seemingly never ending threat to his role within the family in the future, adding: 鈥淔amily has always been important to me 鈥� I would say my worries about long COVID are mostly connected to that.鈥�

Older people we spoke to talked candidly about the pain of facing up to a premature end to their active and healthy selves. Andrew, 63, described feeling a 鈥渓oss of belief in myself and the definition of me as a healthy person 鈥� Suddenly you鈥檝e just got something dictating to you what you can and can鈥檛 do.鈥�

Younger interviewees wrestled with the unexpected disruption to their formerly vibrant social and educational lives. For Fiona, an athlete in her early 30s, the experience of feeling less competitive had been particularly tough:

鈥�A big part of my life has been playing sport at a very high level, but I am not able to be the player I was beforehand 鈥� Now, I鈥檓 one of the mediocre players and am not given the same responsibilities because I鈥檓 just not capable any more. I found it a little bit hard to adjust to 鈥� like I鈥檇 lost my identity slightly.

Mourning the loss of physical capabilities

In A Grief Observed, C.S. Lewis (using the pseudonym N.W. Clerk) offered reflections on bereavement after the death of his wife in 1960. Drawing parallels between his loss and the amputation of a limb, Lewis suggested both experiences could result in a profound loss of identity in which 鈥渁ll sorts of pleasures and activities that I once took for granted will have to be simply written off鈥�. In this way, Lewis said, his 鈥渨hole way of life will be changed鈥�.

Our interviewees highlighted similar feelings that we describe as 鈥渘on-death related grief鈥�. Their emotions were often raw and intense as they confronted not only loss of their former identity and lifestyle, but control of their body. Among those who mourned this profoundly was Susan, 63, who told us:

鈥�I always was a fairly confident person, always had big responsible jobs which I sort of thrived on 鈥� the stress and all the rest of it. Now, I just feel like I鈥檓 a little old lady. I don鈥檛 have any confidence at all. I would much prefer not to go out of the house at all, I鈥檒l stay at home and cuddle up 鈥� I鈥檓 just a shadow of who I used to be.

Sociologist Arthur Frank argued that our bodies provide an important way for us to make sense of our experiences and connect with others. This may help explain how loss of control of the body can give rise to a form of grieving. Interviewees such as Craig, 51, described their regret at having to bid farewell to previously taken-for-granted capabilities, and the sense of self these gave him:

鈥�The things I used to really enjoy, like cycling and running, I just can鈥檛 do those at the same level now at all 鈥� I keep thinking: 鈥極h yeah, I might be all right now, get out and do it.鈥� But within a couple of hundred metres, I realise I just haven鈥檛 got that ability 鈥� My whole lifestyle has changed and my whole social scene has changed because of it, as a knock-on effect.

The painful aspect of grief arises from the ruptures it creates in our lives. Meghan, in her early 20s, said that contracting long COVID had forced her to 鈥渞elearn鈥� how to live life on a daily basis, and that it has been 鈥渜uite difficult to come to terms with my body 鈥� basically becoming this new thing that I don鈥檛 really know how to take care of鈥�.

Fear of an uncertain future

Our participants faced daily struggles not only with the grief of losing their cherished past but fear of their uncertain future. As philosopher S酶ren Kierkegaard puts it: 鈥淟ife can only be understood backward, but it must be lived forwards.鈥�

People living with long COVID often struggle with both the complexities of ever-changing symptoms and the lack of sufficient treatment options, leading to a constant state of uncertainty 鈥� like walking in the dark without knowing where they are heading. Paul, 75, said he had no choice but to 鈥渓ive day-by-day鈥� in the shadow cast by his unstable health conditions:

鈥�The biggest worry I have is if anything happened to my wife 鈥� if I was left on my own and couldn鈥檛 support myself, cook or dress myself 鈥� But we鈥檙e living for today and trying not to dwell [on that].

Life can be likened to the crafting of a book, with each scene gaining significance only when seen within the context of its broader narrative. Finding coherence in our life stories is crucial to maintaining meaning and purpose, and building a buffer against the challenges of day-to-day life. But for many, long COVID has disrupted this narrative, leading to a profound realisation of their vulnerability and mortality. As Iris, 75, put it:

鈥�It knocks the stuffing out of you. You don鈥檛 feel the same. I know I鈥檓 getting older, but it has made me feel vulnerable and susceptible to illnesses. I鈥檓 aware of being more afraid. Well, we all know we鈥檝e got to die, don鈥檛 we?

Notably, similar fears were also articulated by some much younger (and seemingly fitter) interviewees such as Kate, who was 21 when we met her:

鈥�The narrative I was fed, and a lot of people my age were fed, at the start of the pandemic was: 鈥極h, you鈥檙e young, you鈥檙e basically invincible.鈥� But this experience has made me realise I鈥檓 actually not invincible, and I get sick quite a lot now because of long COVID 鈥� People are much more vulnerable than we think.

Suffering in silence

Existential crises are hard to explain. Many of our interviewees found it easier to articulate the surface-level challenges they faced, while struggling to convey the nuanced experiences of their deeper suffering. In part, this may be because our society lacks the appropriate vocabulary to capture such profound and wide-ranging pain.

Lisa, in her early 30s, told us her struggles were 鈥渞eally difficult to explain鈥� and, as a result, did not believe that her family and healthcare professionals 鈥渇ully understood exactly how bad it was鈥�. She felt there was 鈥渘o point really talking about it as I could tell it鈥檚 upsetting for people to hear鈥�.

While a lack of understanding may in part be due to limited information about this newly-emerged health condition, the invisibility of sufferers鈥� pain also plays a significant role. John, 63, said he found it challenging to communicate his 鈥渉idden disability鈥� and associated suffering because he was 鈥渘ot in a wheelchair鈥� and didn鈥檛 have 鈥渁 plaster cast on my hand鈥�.

Many of our participants admitted lacking the knowledge to understand and verbalise their painful experiences, let alone their more existential worries. Pat, 51, was among those who found it hard to express their feelings adequately. It was only when her interviewer described similar struggles observed in other participants that Pat suddenly recognised how the concept of existential crisis mirrored her own experiences. She said: 鈥淵ou [the interviewer] have hit the nail on the head. People don鈥檛 understand it, but I am very conscious of it.鈥�

The barriers to describing existential crisis can be entrenched by feelings of guilt at how other people may view you 鈥� in particular, concern that they think you鈥檙e making too much fuss. Lucy, who we introduced at the start of this article, spoke powerfully about how this made her stop talking about her struggles:

鈥�You don鈥檛 want to be a misery guts. My family had two years of me really very ill, so I try and not share too much 鈥� [same with] friends and colleagues. Usually, you might go to a friend and say: 鈥業 feel depressed and miserable鈥�, and talk it through. But with this illness, you can鈥檛 because you feel that you鈥檝e used up all your misery points. It鈥檚 like nobody wants to hear about it all the time, so you end up just internalising it and actually that鈥檚 quite depressing.

A lack of empathy in society at large can create additional obstacles to recognising and addressing hard-to-explain feelings of loss, regret and anxiety. For 37-year-old Ahmad, a Pakistani immigrant, his struggles of meaninglessness were compounded by his difficulty securing a visa extension to work in the UK 鈥� leading to him losing both emotional and material grounds for his existence.:

鈥�I became a victim of anxiety. My company did not want to accept that I am ill. I had already taken a six-week sicknote and couldn鈥檛 take any more, because my financial position was very weak. I got no help from the government [and] I did not have family that could support me to keep myself alive鈥� Mentally I am affected a lot, I am now mentally ill.

We need to talk about existential concerns

Our study has uncovered a fascinating trend among long COVID patients that we believe carries much wider relevance: profound self-reflection on the meaning of a life, triggered by a major disruption to their existing narrative.

We are all likely to encounter such a point in our lives 鈥� akin to feeling detached from both our past and future, causing a loss of meaning and purpose in the present. This sensation can make us feel isolated and desperately seeking validation to justify our existence. Lucy described the debilitating impact of her ongoing battle with long-term COVID symptoms as 鈥渓ike having to learn to walk again鈥�:

鈥�It鈥檚 really hard, because you no longer get the kind of mental release you get from being physically active 鈥� I鈥檝e had to just stop myself and say: 鈥楴o, slow down, take a break.鈥� Because otherwise I just can鈥檛 manage, and that is the most difficult thing of all.

When considering coping strategies, we believe it is essential to promote a better understanding of the prevalence of existential crisis among society as a whole. Not everyone, of course, can access highly specialised support such as existential therapy, which can be a useful tool for confronting existential dilemmas and gaining insight into values and beliefs.

What鈥檚 needed is a more accessible way to directly address and discuss our existential worries. For example, psychologist Lauren Breen and colleagues have called for 鈥済rief literacy鈥� to help create more compassionate communities. This initiative aims to encourage people who have experienced loss, as well as the wider community, to become more knowledgeable and proactive in supporting those experiencing grief in everyday conversations and interactions.

A European research project has created a programme to help healthcare professionals engage in existential conversations more sensitively and confidently. Such initiatives are particularly important in mental health and peer support settings 鈥� encouraging people to engage with both professionals and peers who share similar experiences, facilitating open conversations and fostering a sense of understanding. Sharing life stories is also a way to bring feelings of loss and uncertainty into the fabric of daily life.

In our view, the key to supporting people in times of existential crisis lies in the power of empathy, where grief, fear and anxiety are listened to and validated. Indeed, attaining a deeper understanding of these experiences may help open a door to positive self-reflection, potentially revealing new perspectives and meanings in life.

Ultimately, when reflecting on his experience of living with long COVID, John described finding some comfort in the transcendent nature of his struggles:

鈥�Everything, everything by which I defined myself was taken away 鈥� I was left with 鈥榳ho am I?鈥� and 鈥榳hat is the meaning of life?鈥� Big questions which felt very profound and gave me a huge insight into suffering, and a compassion for other people who suffer 鈥� whether someone鈥檚 a refugee or they鈥檝e broken their leg. I suppose I went on a very deep internal journey. Whereas before I鈥檇 been used to going on external journeys like walking or climbing, I went on an internal journey that鈥檚 equally as adventurous and challenging 鈥� and continues to be so.

*All names have been anonymised to protect the interviewees鈥� identities

This article was first published in on 24 August, 2023.

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• IOE - 果冻影院's Faculty of Education & Society