The Bittersweet Nature Of Chronic Illness

pippa's hand holding an orange paperback copy of bittersweet by susan cain

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A few years ago, I read Quiet by Susan Cain*. That book changed my life – not only with its unique narrative non-fiction style, fusing personal experience with broader research, but with how much the subject matter spoke to me. Since then, I’ve been wondering if the author will ever write another book, and whether it would speak to me in the same way… and after reading the recently released Bittersweet*, it’s safe to say that this one will have a lasting impact on me too.

Bittersweetness, as the book demonstrates, is a concept the world is yet to fully delve into. It’s defined as ‘a tendency towards sorrow and longing, a piercing joy when beholding beauty, an acute awareness of the passing of time’. It’s also described as ‘a recognition of the dualities of life: light and dark, birth and death, bitter and sweet’. So, with that in mind, how bittersweet would you say you are in this moment? And how might this intersect with chronic illness?

What do we mean by ‘bittersweet’?

A bittersweet state seems to be in some of us innately – it’s the way we have always been. Others go to lengths to avoid bittersweetness, to sidestep vulnerability and the risks it can bring. This book sets out to show us that learning to recognise the bitter and the sweet and how they can co-exist in our lives can bring strength, power, and positive change.

Naturally, the very first thing my brain did was look at bittersweetness through the lens of chronic illness. After all, who knows better than us that when you’re dealing with a long-term health condition, you have no choice but to try and find the joy amidst the struggle? Often, we’re led to believe that happiness is the absence of pain – however, when there’s no end in sight for your pain, you adapt. You learn to find joy in and amongst the struggle, rather than in place of it.

That’s not to say that bittersweetness exists only in singular feelings or events in singular moments of time. Instead, the book argues, it’s a way of being. As Susan Cain puts it, “it’s an authentic and elevating response to the problem of being alive in a deeply flawed yet stubbornly beautiful world”.

Another key element of bittersweetness proposed by the author is the idea of melancholy. Often described as ‘a feeling of pensive sadness’, it’s no wonder this concept has negative connotations in society today. However, if we’re to embrace the concept of bittersweetness, this means embracing the melancholic parts of life too.

This idea particularly appealed to me, for a very specific reason. When you’re living with a chronic illness, sometimes it can feel as though you’re not ‘allowed’ sadness or melancholy. Society has taught us to believe that the ‘right’ way to be long-term ill is to be joyful and inspirational, only looking forward rather than dwelling on the tougher parts of the situation. From experience, it can even seem as though living this way is the only way the world will make space for you when you’re disabled, but also from experience (as somebody who has tried to be that joyful and inspirational poorly person and completely burned themselves out in the process), I now know all too well that the safest and healthiest way to show up in the world is to acknowledge the melancholy rather than try and deny it altogether.

By reflecting on the bitter, we’re more able to find the sweetness – not instead of it, but within it and among it. After all, if we’re not prepared to hold space for the negative, then how can we possibly be our most authentic selves? And trust me, it’s a lot less exhausting to be your authentic self than it is to try and be what you think you’re expected to be. But we’ll save that discussion for another time.

The Vagus Nerve

In my last Susan Cain-inspired blog post, I talked about a world-changing moment where I read something that rung so true to me that it almost felt like a personal attack. I had a similar moment in this book – not in quite the same way where I saw my lived experience on the page in front of me, but when one of the concepts sparked my attention and led to some further digging into the research around it.

For a long time, the vagus nerve has been implicated in research and discussions about chronic illness, especially conditions with an autonomic element like ME/CFS. In a nutshell, the vagus nerve is a long nerve that runs from your brain right down to your abdomen, and it plays an important part in your parasympathetic nervous system. As the parasympathetic nervous system is an essential mechanism for regulating your bodily state after periods of fight or flight, this is heavily implicated with chronic illnesses – after all, without this ‘rest and digest’ process, many of us find ourselves utterly frazzled under the weight of our bodies’ dysregulation.

To take this one step further, The Vagus Nerve Hypothesis proposes that, in some individuals, the symptoms of chronic fatigue syndrome (the 2013 study authors’ wording) are triggered by an infection in or around the vagus nerve. This leads to the vagus nerve signalling to the brain there is infection present in the body, leading to a systemic reaction – leading to fatigue, fever, muscular pain and many other symptoms commonly associated with ME/CFS. Research evidence to support this theory is almost impossible to obtain since the vagus nerve cannot be removed or biopsied to search for signs of infection, but this area continues to be of great research interest and will likely be given further attention in the future.

I had a vague understanding of and interest in the vagus nerve safely tucked away in the back of my foggy mind, but I definitely wasn’t expecting it to be brought right to the front of my thoughts in Bittersweet’s chapter on sorrow and belonging. However, the more I learned about Dacher Keltner and his work through the Greater Good Science Centre as the chapter went on, the more intrigued I became. Among many other interesting areas, Keltner has devoted his time to diving into how our evolutionary heritage influences how we perceive bittersweetness, sorrow and longing. He hypothesises that the more intelligent our species has become over time, the more sympathetic we as humans had to become to care for our most vulnerable. Over time, we’ve learned to treasure others in a very similar way to the primitive means of caring for our own offspring – leading to a much greater capacity for compassion. When the welfare of others is threatened, it elicits not only powerful biological responses in us… but emotional responses too.

This in turn (bear with me, I’m getting there!) led Keltner to studying how we cultivate humanity and how attitudes of superiority affect this… and it’s here where the vagus nerve was briefly mentioned. It was found that wealthy and high-ranking people were less likely to help others in need, while the respectful act of bowing down that’s a regular part of social life in Japanese culture actually stimulates the vagus nerve. This, Keltner has stated, has led to more people thinking about the mind-body interface in this context.

So, why am I even mentioning any of this? Intrigued by the brief mention of the vagus nerve in this chapter and my (limited) pre-existing knowledge within the sphere of chronic illness, I decided to Google more of Keltner’s work around the vagus nerve… and one of the first results that popped up was a 2017 study by Stellar and Keltner titled ‘Compassion in the autonomic nervous system: the role of the vagus nerve’.

Drawing upon extensive previous research, the authors propose that ‘higher vagal tone may be associated with more compassionate individuals’ and that ‘vagal activation may increase activity during momentary experiences of compassion’. This implies that the vagus nerve could play a crucial role in the ability to be compassionate towards others, and that increased compassion is associated with increased activity in the autonomic nervous system – the same system that is so often working in overdrive in people with chronic illnesses.

There isn’t anything that qualifies me to draw a connection between the two. There is no research in the area, and the autonomic nervous system and the way we define compassion are both complex. However, could it be that the autonomic nervous system in people with chronic illnesses has to work so hard to help us maintain homeostasis that the impact this has on activating the vagus nerve also plays a role in the heightened levels of compassion you often find in these people? Does the evolutionary nature of this have implications for who is at risk of developing similar conditions in the future? And most interestingly, do these findings indicate that us chronically ill folk might be biologically or behaviourally predisposed to this concept of bittersweetness?

I’m done now, I promise. It’s just all so interesting, and I’d absolutely love to hear any thoughts on that; especially if you’re more qualified than me (and my half a Master’s degree in health psychology that ironically, chronic illness forced me to let go of) to understand it!

Bittersweetness and Creativity

One of the most compelling examples of human bittersweetness, chronic illness or no chronic illness, is the often-indescribable pull of sad, sorrowful music. A recent study by Conrad et al found that while people whose favourite songs make them feel happy play them on average 175 times, those whose favour songs that make them feel ‘bittersweet’ play them on average 800 times. But why do so many of us love sorrowful music, and why do we return to it so often even when we ourselves aren’t in the same sorrowful mood it seems designed for? According to this research, it’s because people feel they have a stronger and deeper connection to bittersweet music. These songs don’t only represent sorrow or sadness – they portray profound beauty, nostalgia, transcendence and common humanity – sublime emotions that are far more multifaceted than sadness alone.

Again, this concept really hit home for me. I’ve always been drawn to music that ‘hits me in the feels’ – whether that’s classical, lyrical, or something more contemporary. And for me, music has always been and will always be intertwined with dancing. Having grown up as a ballet dancer, for as long as I remember I haven’t been able to hear melancholy music without automatically dancing and choreographing in my head. Even now that my physical ability to dance has come to an end, I’ve always gravitated towards melancholy music and danced in my head. I can’t not. It’s like a coping mechanism, and since reading this book, it has become even more clear to me – the primary emotion I experience through this is bittersweetness. I’m aware of what I’ve lost and what I’m still, all these years later, yearning for – the ability to dance. However, in that moment, dancing in my head is a pure indulgence that makes my insides feel as though they’re glowing and my heart as though it’s about to burst. It’s sorrow, and joy, and longing, all in one. Bittersweetness.

This led me to wonder whether my own perceptions of bittersweetness are innate, or something I’ve acquired through my lived experiences. If I hadn’t fallen in love with dancing as a child or become disabled as a young adult, who’s to say I would be able to relate to the concepts within this book so readily? However, the final concept (of many, many interesting concepts throughout the read) that I want to discuss here is one that I feel may be the most innate of them all – and there’s every chance that you, dear reader, will feel a similar way.

Your Creative Offering

“It’s not that pain equals art. It’s that creativity has the power to look pain in the eye, and to decide to turn it into something better”. 

For as long as I can remember, I’ve had an inexplicable need to turn everything I think and experience into words. I have to write. It doesn’t matter what form it’s in or who it’s for – it’s the act of writing itself that matters. Sometimes, I won’t be able to work out why I don’t quite feel like ‘myself’, and I’ll later realise it’s because I haven’t written that day. I can’t say this innate need is especially compatible with a debilitating chronic illness, but I do my best to find the middle ground.

Never before have I been able to explain this insatiable need to put words to everything – to take my feelings and experiences, no matter how messy, and find ways of communicating them. However, this book taught me that bittersweetness is ‘the idea of transforming pain into creativity, transcendence, and love’ – and after reading that, I realised that tapping into my feelings and expressing them in words is at the very core of who I am as a person.

In the past, I’ve been reluctant to talk about how much writing means to me, because I feared that saying so would mean people expect me to be a great writer, somebody who produces remarkable things… and I can never shake this feeling that even my best work would be a disappointment by comparison. However, the subsequent point from the book, drawn from various research studies by James W Pennebaker that I want to drive home here is that expressive writing is a phenomenon that doesn’t hinge on how ‘good’ or ‘talented’ you are at writing. In one study, a group of people who tapped into their emotions and wrote about their troubles for twenty minutes a day for just three days were markedly calmer and happier than the control group. Reported longer-term effects included better relationships, more success at work, and even lower blood pressure. And none of those outcomes hinged on the quality of the work – the act of bittersweet writing was enough.

Many chronically ill people, like me, find writing to be a lifeline for them. Others have found solace in other creative outlets – art, content creation, advocacy. Whatever your chosen creative outlet may be, just being able to channel that pain into something else is the key.

Chronic illness is isolating, and it’s tough. I truly believe that having your life profoundly affected by disability means that making room to accommodate the sorrow and longing that comes hand in hand with that is the only way to rediscover meaning and purpose… or sometimes, simply get through the day. And the more of this book that I read, the more I realised that bittersweetness is the buzzword here. It encapsulates everything I’ve learned over the last decade about finding moments of joy in amongst the difficulty… and I can only hope that through sharing some of my own thoughts through my own creative outlets might have some kind of impact for anybody going through the same.

To conclude this very long blog post, I’ll leave you with a question from the book that I felt most deeply: “what is the ache you can’t get rid of – and could you make it your creative offering?”

If you made it to the end of this one (I’d be impressed!), I’d really love to hear your own thoughts. And if you’re interested in reading more, don’t forget to purchase your own copy of Bittersweet* by Susan Cain!

3 Responses

  1. I’ve made a note to check out Susan Cain, thank you. I wouldn’t have thought the Vagus nerve would have been included in the book so that’s interesting. I’ve read a little on it too but I don’t really know enough to form a solid opinion either way; like you say, it’s hard for researchers to really research it adequately. As for the bowing in Japanese culture… wow. I never would have tied the two together. You could say many with chronic illnesses are indeed very compassionate, but they may have always been like that or their experience of being ill/in pain has enhanced their compassion. I don’t think I really believe it, but it’s still interesting to think about. As my area of study was previously psychology, I agree with the mind/body connection, but I see way too many interconnected and uncontrolled variables.

    I get that too with music though, that’s definitely spot on for some people being drawn towards the more sorrowful, meaningful, evocative and bittersweet music.

    Fantastic post, Pippa, you’ve given a great insight into the book and some really interesting issues!

    Caz xx

  2. Too tired to say much, but just saying hi I discovered your blog just yesterday and I’m finding it very comforting ❤️

  3. ‘What is the ache you can’t get rid of…?’ – this hit me so hard living with both ME/CFS and PTSD.

    I am recently diagnosed and definitely realising how isolating disability can be. I had already felt this with my mental health and now with my physical health too.

    Finding the joy amongst the sadness sounds like a good concept to keep in mind when things feel impossibly hard.

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