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The Power of Community

It’s no secret that human beings are extremely social animals. Ever since our evolutionary branch sprouted, there has been a desire for community. I read a book a few years ago called ‘Sapiens: A Brief History of Humankind’ by Yuval Noah Harari. It suggested that our ancestors became the most dominant species because of our strong urge to share our values and beliefs with others. The book states that complex social structures were formed as a result of our ability to create ‘imagined realities’. This is information that, unlike lying, is something that everyone believes in even though it has not yet happened. ‘Imagined realities’ are extremely powerful since it drives humans to cooperate as one entity. Before this, like chimpanzees, a clan of humans consisted of a maximum of around 100 individuals. With the ability to create a communal belief, millions of strangers can work towards a common goal. 

I hate to mention it, but the best example of this is football. Show me a better demonstration of a community, because there isn’t one. I guess that’s why they call it the ‘beautiful game’? Football is simply centred on the imagined reality that a supporter's team has a chance of beating the opponent. Some teams have more ambitious imagined realities than others, but I won’t mention any teams in particular, as I do not want to get political! But community is the basis of our complex social structures. Go to any sports arena, any marathon event, any theatre, concert, anywhere where there is a huddle of humans. That is community. And that is what we thrive off. It is what made us the species we are today. How cool is that? It really is a fantastic book and I certainly would recommend the read, if you have an interest in that kind of stuff!

Before getting long covid in February of this year, I had never even considered that a young person could get long covid. I wasn’t aware that it was something that individuals could experience when they had only a mild initial covid infection. That may have been naive of me, but I had only ever seen sufferers of long covid begin their recovery in hospital as a result of serious health complications. I remember watching the documentary called ‘Kate Garraway Finding Derek’ back in March 2021. This propelled long covid onto the centre stage in the UK by depicting the story of a 54-year-old man named Derek, who caught covid early in the pandemic and consequently spent a year in hospital. I believe he is doing a lot better now, but unfortunately, I do not think he is fully out of the woods yet. Although the programme provided a shocking narrative of the long-term devastation that the pandemic created, it prompted me to believe that long covid was rare and that it was impossible for me to get it. 

As for chronic fatigue syndrome (CFS/ME), this term was yet to even enter my vocabulary before this year. To be absolutely honest, I am embarrassed to say that the first time I heard the phrase ‘ME’ I thought it was analogous to multiple sclerosis (MS). I was completely unaware that there was an entire community out there that had lost their normal lives to chronic fatigue. I suppose this is why the charity ‘ME Action’ created a global campaign called ‘# Millions missing’ which works to raise awareness, provide support and demand equality for those suffering with ME. Although there are charities and medical institutions that work to support the ME community, there simply has not been enough awareness and support for those suffering. If you were like me and know very little about CFS/ME, I would urge you to find out more about it. 

For the past 5 months, I have been struggling with the physical and mental effects of long covid. The persistent symptoms have greatly limited my ability to do everyday things I once took for granted. Nevertheless, I am very pleased to say that I am experiencing less frequent ‘bad days’ and I see myself making small improvements each day. I know I have a long way to go and I am still very much in the tunnel, but I am starting to see a flicker of the light at the end of it! I am aware of how lucky I am to start to notice these breakthroughs in my recovery, no matter how little they may be. Others are not as fortunate and have been suffering for a lot longer, with more challenging symptoms and no glimpses of progress in their recovery. 

However, there is no doubt that amongst all of the physical pain that long covid creates, the emotional torment is perhaps the worst thing about it. It is still not yet possible for me to go back to work and I am not sure when I will be able to. I still feel a heavy amount of guilt when I think about who I have let down these past few months and the burden that I’ve placed on my loved ones. I have also found myself mourning the ‘old me’ and felt remorseful that my family has lost her too (she will be back though!). But the predominant emotion I have felt through this though is the feeling of isolation. Don’t get me wrong, I’ve been inundated with love and support throughout this whole experience. It’s just people who haven’t experienced long covid aren't able to fully understand what it’s truly like to have it and this can create a disconnect from others. You could be in a room of all the people you love, that are doing everything they can to help you, but still feel completely alone. Many people experience this feeling of loneliness when they have a chronic illness. But just like our fatigue is so different from typical tiredness, this isolation feels very different from typical loneliness. 

To minimise the physical symptoms of long covid, there are painkillers, medication, hot water bottles, cold packs, physiotherapy, and my Mum’s personal favourite, tiger balm (also known as china gel!). At the start of being unwell, I believed there wasn't much out there for the emotional pain. I am not ashamed to say that I have now started to see a wonderful counsellor to guide me through my journey of recovery. This has been extremely beneficial and I know she will continue to be a huge support to me even after I have fully recovered. Other than therapy though, I used to believe that there wasn’t a great deal else that could be done to lessen the psychological toll of a chronic illness. However, I now know that there is. And that is ‘community’.

As Homo sapiens, we have an innate desire to be not only listened to but also be heard. Even before we could talk we would demand attention from our caregiver and would be instantly soothed when our needs were met. Connection with others is what we crave and the desire to resonate with another human being is one of our most powerful instincts. A study done by Michalski et al (2020) demonstrated this by finding a relationship between community belonging and physical and mental health. They found that the more someone had a strong sense of community in their lives, the healthier and happier they felt. So when we don’t receive this regard or relatedness from others we end up feeling voiceless. Which is probably the most sorrowful emotion we, as humans, can feel. The Latin derivative for ‘community’ comes from ‘communis’ which means “common or shared by all”. This is derived from the prefix ‘con’, which means “together”. In reality, a sense of community could be considered as the opposite of loneliness, since it’s the shared commonalities that bring people together. This is what the focus of my post is on.

The devastation of being voiceless can crush a soul and as I have mentioned before in previous posts, it can be catastrophic for the recovery from a chronic illness. That’s why community is particularly important for these individuals. However, when someone becomes unwell from long covid, or a similar condition, many parts of their lives simply stop. They aren’t working, so the community they feel with their colleagues comes to a halt. They can no longer exercise or carry out hobbies they used to be able to, so that community is also lost. In addition to this, chronic illness sufferers can mostly say goodbye to their social lives, with some even losing friends because of their condition. In other words, at the very time when a sense of community is fundamentally and urgently required, it is lost. It is quite ironic when you think about it! The thing that is making an individual feel lonely, is the exact same thing that makes the individual alone. I call this the ‘disconnection dilemma’ and it is very real and very scary for those who suffer from it. 

But guess what! As aforementioned, community is based on ‘shared interests’. So if the majority of individuals within the long covid community feel isolated and alone, then that is our commonality. Now that is irony! What’s even more ironic is that being part of a community often requires some amount of energy and perhaps even an inclination to contribute to it in some way. However, chronic illness sufferers that have persistent, debilitating symptoms aren’t able to do either of those things. Sometimes, to even be an onlooker in the community is far too demanding for individuals (a couple of months ago I would have struggled to even read this post, let alone write it!). That is the nature of the chronic illness beast. It is also why I felt so passionate to start writing this blog in the first place. I know there are people out there that aren’t able to write anything about their own experiences or perhaps they understandably don’t want to (it’s quite a lot of effort!). I believe that it is so important to be an advocate for your community whenever it is possible for you to do so. Because that is exactly what community is all about. 

I have done many things to support my recovery, most of which I have already mentioned in a previous post somewhere. But the thing that has helped me the most is the community I am now a part of. Sharing my own story and more importantly, hearing other people’s stories have been invaluable to me. I now simply refuse to feel alone. Because I am not. I am very much part of a beautiful community of individuals that are going through a very similar experience to me. Some may be struggling with more intense symptoms, and others may be coping better with theirs, but we are all in it together. Just like those shirtless rowdy people in the football stadium stands. The truth of it is that we are all going through the motions of having a chronic illness and we are learning to navigate life with it. With the football fans having their imagined realities of winning the premiership, our imagined reality is that we will get through this. Some may not ever feel fully healed both mentally and physically, but light will be found somewhere amongst the darkness. That is our imagined reality. 

So to conclude this post I wanted to encourage this sense of community and ask you 3 questions. You are not obliged to share your answers but if you wish, you are welcome to post a comment on this post with your responses.

Please note you do not need to be suffering from a chronic illness to participate in this. That is the beauty of a community, everyone is welcome!

My questions are:

  1. In what community do you feel the most belonging?

  2. What do you personally bring to the communities you are a part of?

  3. How would you go about creating a better sense of community?

Coming from a perfectionist, I promise there are no right or wrong answers and you can give multiple responses if you can’t think of just one (I have!).

These are my answers for what it is worth:

  1. The long covid community and with my family.

  2. I raise awareness for long covid through my posts. As for my family, I provide them with support, a helping hand (when I can) and I contribute to the wonderful quality time we have together.

  3. Continue to write about long Covid for myself and on behalf of others that aren’t yet able to. Continue to listen and hear stories from individuals that just want to be heard. 

Articles referenced

Michalski, C., Diemert, L., Helliwell, J., Goel, V., Rosella, L. 2020. Relationship between sense of community belonging and self-rated health across life stages. SSM Popu Health. 12: 100676.

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