4 common reasons why Covid long haulers can struggle with grief

Living with Long Covid can bring significant changes to your life and how you are able to live it. When these changes involve the loss of something that is important to you, it can help to acknowledge that what you feel is grief. This is an understandable reaction, a process that may present in different stages, and that may come and go. It’s something that you’re certainly not alone in experiencing. Here are four different areas of Covid long haulers’ lives that prompt grieving.

1) Grief for your former self-identity

People with Long Covid can struggle with their self-identity when adjusting to their various physical and psychological symptoms. This means that work, socialising, personal care, sex and hobbies can all be affected by not being able to do as much as you used to be able to. Some of these may be core elements of who you feel you are. 

Some people with Long Covid describe their bodies as not seeming like their own anymore, due to the changes and symptoms that they are now living with. Our self-image and body-image can feature strongly in our self-identity, so this might feel really significant for you.

Self-identity can be defined as “the way somebody considers their characteristics as a particular individual, especially in relation to the social environment they live or work in.” The social context is important here; being unable to access the people, places, or events where you express an aspect of yourself can lead individuals to feel unseen or inactive. This may be particularly so for those whose self-identity includes being part of a group, such as in team sports - or within BIPOC, religious or LGBTQIA communities. 

Although many organisations continue to hold online events, these may not feel the same as in-person meet-ups. However, you might find that they help you maintain links with your interests and networks. Talking about your grief with someone who understands the things that are important to you can bring support, as well as reduce feelings of isolation.

2) Grief for your former lifestyle

A sense of loss for aspects of your life that you have been unable to access since having Covid can be frustrating, and hard to accept. Whilst fatigue, concentration difficulties and brain fog can limit what you feel able to do, other symptoms can also alter what you get enjoyment from. For example, changes to your taste and smell may have affected your diet, which may have in turn affected your nutrition and daily routine. It’s natural to grieve for these things individually, as well as to grieve for your life as it was. Allowing yourself to do so, and giving space and means of expression to your feelings, can be an important part of the grief process.

If you are continuing to self-isolate, or avoid certain kinds of events, it’s understandable to feel that grief amplified seeing others resume activities since the lifting of Covid restrictions. Counselling, or other talking therapies, may help you to explore your feelings and work towards coming to terms with the changes that you have experienced. You can ask your GP what’s available where you live, or search online. Talking with others going through a similar experience may also help. Covid:aid has an online support community, with a specific Long Covid hub. There are other online forums and social media groups too.

3) Bereavement

Some people will have sadly lost loved ones through the Covid-19 pandemic. Bereavement can involve particular sub-types of grief. For example, the grieving process entered into when a death is expected, but has not yet happened, is known as anticipatory grief. Grief following a sudden, unexpected death may be traumatic grief. 

If you have experienced bereavement during the pandemic, you likely faced restrictions around funeral arrangements and other aspects of your bereavement journey. This may have included whether you were able to visit the person during the time leading up to their death, to say goodbye. Not being able to engage in usual cultural practices around death and mourning may result in feeling a lack of closure, increased loneliness, and other challenges for those grieving.

Like with other things that we grieve for, bereavement is a difficult process where the intensity of your emotions may come and go, and change over time. Some people find that bereavement inspires creativity, activism, memorial tributes, or looking at life with a renewed perspective. Others don’t; whatever you feel is valid. 

Mind has resources on bereavement that offer a variety of personal stories, as well as advice to help you cope and get support. The covid:aid website has a loss, grief and bereavement page, including a Grief Chat message service. You can also listen to a recent podcast where covid:aid talked to the makers of These Four Walls: a short film about experiencing bereavement during the pandemic.

4) Grief for the world as we knew it

We all now carry uncertainty around the future of Covid-19, and the possibility of other pandemics. Although the world around us is always changing, the upheaval caused by the virus and the lockdowns was relatively sudden and unprecedented. It is likely that there is a collective grief for stability that we had felt within our social systems, and in our individual lifestyles. That might include grieving for being able to feel as carefree as we might have felt before the pandemic. It takes time to adapt to new ways of living; we need to be gentle with ourselves and each other as we learn.

Covid long haulers may hold particular concerns around the prevalence of the virus, as well as anxiety about their recovery time, and the possibility of relapse or reinfection. You might worry about employment and finances, socialising and relationships, and for the wellbeing of friends and family. When Covid restrictions ended, this anxiety increased for many who are clinically vulnerable. 

Although the threat from Covid-19 can be very hard to live with, it may hold opportunities for developing personal resilience. It calls for us to build strong support networks and self-care strategies, and for professionals and communities to be open to talking about grief and other struggles. It also highlights a need for continued research into the challenges that Covid long haulers face. 

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Whilst grief can be painful, confusing and disruptive, most people encounter it at some point in their lives. This means you are far from alone, even if what you are grieving for is something as unique as your self-identity. Naming your grief can, in itself, be a vital part of the journey towards it eventually easing in time, with support, and by being kind and patient with yourself.