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Fiction. Whether it be through books, television, or film, it allows us to inhabit a world away from reality. To reside, and experience life through the eyes of fictional characters beyond the existence of the chronic illness.

The ability to escape into fictional worlds away from the grim reality of pain and illness is a welcome relief. However, as this reality is isolating, we often crave for fiction to become a mirror; one that reflects our feelings and experience and the truth of living with chronic illness. To spend time with characters with whom we can relate. Those that make us feel less alone, in a world that makes us feel alone in our struggles.

"We often crave for fiction to become a mirror; one that reflects our feelings and experience and the truth of living with chronic illness." Share on X

Lack of Representation of Chronic Illness in Books and Mainstream Television

The problem, however, is that there is an evident lack of representation of chronic illness in books and mainstream television. The portrayals that do exist do so at the end of two opposing spectrums. Either they paint the very worst-case scenario or a tear-jerking account of triumph over adversity and sugary optimism. There seem to be few realistic depictions of the stark, painful truth of life with a life-long condition. Those living with such afflictions either portrayed as brave and inspiring. Or otherwise painted as being fragile and in need of taking care of by others who are more capable.

"There seem to be few realistic depictions of the stark, painful truth of life with a life-long condition. Those living with such afflictions either portrayed as inspiring. Or they are otherwise painted as being fragile." Share on X

Sadly, there is room for improvement regarding the representation of chronic illness on television. Firstly, there seems to be a distinct lack of characters exhibiting chronic conditions on mainstream television. When there are, however, it does so with little realism of the truth of what living with illness entails. When a television series announces a storyline regarding chronic illness, is met with interest and anticipation. Very often, however, it turns quickly to disappointment. Such storylines hold great promise, at first, successful at raising awareness of the issues portrayed. However, as the storyline ends, there is very little continuation surrounding illness and its impact.

"Storylines featuring chronic illness at first are successful at raising awareness, but often there is very little continuation surrounding illness and its enduring impact." Share on X

Illness Remains Invisible and Ignored in Fiction

Chronic illness remains invisible and ignored in its representation in fiction. In a way implying that those struggling with chronic illness are not tragic enough to be seen or their voices heard. We want content that can guide us, and give us direction on how to live well with chronic illness. We want fictional characters to whom we can look up to and learn how not to be dictated by disease.

"Chronic illness remains invisible and ignored in its representation in fiction. In a way implying that those struggling with such issues are not tragic enough to be seen or their voices heard." Share on X

However, that is not to say that we cannot relate to or find lessons within fiction that do not feature chronic illness. The following are books and television characters that have taught me about how to cope with a neurological disorder.

"These are the books and fictional television characters that, although they do not feature chronic illness, have still taught me about how to cope with living with a neurological disorder." Share on X

What Can Fiction Teach Us About Living With Chronic Illness?

Little Women: We gain strength and resilience from the storms in life

A classic book that has been my favourite reading material since I first read it as a young child. A book that resonates, as the four March sisters navigate their way from childhood to become young women. Each aware of their strengths and weaknesses and make their tumultuous journey toward womanhood to become the best version of themselves.

There is one quote that as someone living with the adversity from illness has continued to resonate.

The lesson of the growth and resilience gained from living through the painful times of living with chronic illness

The quote is apt for someone navigating an uncertain future.  Living with chronic illness, we experience many ups and downs, thrust into flares and severe exacerbations in our symptoms.  This quote reminds me, however, of the growth and resilience gained from the difficult and painful moments in life.  Enduring a flare as distressing and painful as it is, it also helps develop improved coping skills in time for the next one. 

"'Little Women' has taught me the growth and resilience gained from experiencing difficult and painful moments as a result of chronic illness. It's continued presence helping to improve useful coping strategies." Share on X

Les Miserables: There will always be a brighter tomorrow

Most famously, the longest-running musical ever, it is, famously based upon the book written by Victor Hugo.  A story of love, loss, and revolution, the characters struggle to overcome great adversity.  A story in which the characters begin to lose hope due to the struggles they endure. 

The lesson of the hope for a brighter and happier tomorrow despite the darkness and pain of living with chronic illness

When facing continuing battles and worsening symptoms, it is too easy to lose hope.  However, there is one quote that inspires, declaring that tomorrow is a new day and in which holds new beginnings. The quote is a reminder that no matter how hard the struggles we face, there is a chance for a better tomorrow.

"Despite the gloomy tone of 'Les Miserables' it is still one that inspires hope for a brighter and happier tomorrow." Share on X

Harry Potter Series: Hope and positivity can help bring us out of the darkness

Like for many, the Harry Potter series of books became a staple of my adolescence and young adulthood. These books delighted both children and adults alike, comprising many life lessons within its pages.

The lesson that although we cannot control what happens to us, we can choose on how we respond

Living with the difficulties and limitations illness entails, it can so easy to succumb to the darkness; remaining there when we are no longer able to cope with the pain. However, Dumbledore reminds us that we all contain the power to bring ourselves out of the darkness with a spark of hope. Although we cannot always control what happens to us, we can choose how we respond to circumstances beyond our control.

Of course, these books also taught us to believe in magic!

"Harry Potter contains many powerful and profound lessons. As someone living with chronic illness, Dumbledore has taught me that although we cannot control what happens to us, we do have the choice on how we respond." Share on X

Oliver Queen (Arrow): You are stronger than you believe

It can be hard to find anything relatable in characters from comic books, or the ever-popular superhero shows.  Featuring characters who can swing above rooftops, or can fly or travel at the speed of light, makes these fictional worlds unrealistic.  What makes Oliver Queen, or the Green Arrow interesting is that he is one of the few superheroes without any superpowers.  And a common thread in the origin stories of superheroes is that with suffering comes an opportunity to learn and be better. 

As someone living with chronic illness, it can be challenging to relate with such characters. Unlike the repercussion of their crisis, we do not gain superhuman powers or abilities. The gift of the suffering of illness is the awareness that we are stronger and more resilient than we ever believed we could be. Living with the plight of debilitating symptoms, we do not know how strong we are until we have no other choice but to be. Oliver learned this during his own five years in hell. As without inner strength, he would not have survived, and not becoming a hero as a result. 

"Living with the plight of debilitating symptoms, we do not know how strong we are until we have no other choice but to be. Something Oliver Queen learned this during his own five years in hell." Share on X

Temperance Brennan (Bones): Always be unapologetically you

Crime dramas are my favourite genre and continue to be fascinated with the methods used to provide justice for victims.  One of my favourite procedural shows is Bones. ‘Bones’ is the nickname of Temperance Brennan, a forensic anthropologist who examines bones to determine how a person died and by whom.  I found her to be a truly inspiring character, impressed by her brilliance.

In one episode, her partner Booth takes a photograph of her weeping over a dead body thanks to pregnancy hormones.  When Booth dismisses it as normal, she protests in her usual emphatic fashion that “I’m not normal, I’m extraordinary.” 

It’s a beautiful reminder that we should not apologise for who we are. And that we should celebrate everything that makes us the unique individual we are.  For years, I felt ashamed of the person I am; the person illness made me. But, Brennan and all her quirks teach us to celebrate who we are unapologetically.

"For years, I felt ashamed of the person I am; the person illness made me. But, Temperance Brennan and all her quirks teach us to celebrate who we are unapologetically." Share on X

Brennan is aware of her worth and not ashamed to boast of her best qualities and achievements. Maybe we could all take a leaf out of her book!

Jane Doe/Remi/Alice Kruger (Blindspot): We do not have to be defined by what happens to us

When we first meet Jane, she is crawling out of a duffel bag in the middle of Times Square. As she emerges, she is completely naked apart from the intricate tattoos that cover her whole body. Suffering from drug-induced amnesia has taken away Jane’s knowledge of herself and everything she once knew.

When I first watched the pilot episode, I found that I resonated with Jane. When diagnosed with a life-long condition, there are many unknowns and questions to navigate. Just like Jane Doe. Through the course of the series, Jane begins to find herself despite her lack of memories. Jane even becomes a part of the FBI team investigating her and the tattoos that points them towards criminal investigations.

The show reminds us that we do not have to be defined by the significant life-changing experiences that we face. The story is a lesson that we can choose not to be defined by chronic illness. There is much more to us beyond being ill. Something which Jane herself learns when she discovers new abilities which include fluency in several languages and a talent for hand to hand combat. Instead, we can forge our chosen path in life. Just like Jane, we can choose the person we want to be, instead of being determined by illness.

"'Blindspot' reminds us that we do not have to be defined by the significant life-changing experience that we face. It is a lesson that we can choose not to be defined by chronic illness." Share on X

I would love to hear your thoughts; what have you learned from a fictional book or characters?

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In my last post, I wrote about my disappointment at not being able to stay at the local multiplex cinema to see Les Misèrables – a film that has been on my ‘must-see’ list since I heard about the film.

However, I have now actually seen it!!  Although it meant that my Personal Assistant and I had to travel further afield to a cinema that is not as big and imposing as the cinema that is nearby.

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And it has made me realise that although our lives is plagued with problems as a result with chronic illness – and often we feel that it leaves us unable to do things that we once enjoyed.  However, maybe the last statement is not true – maybe the way we used to do something is something we are unable to do; but there may be another way that we can still participate in the particular activity.  We just need to find a different path to be able to enjoy our chosen activity.

Not that the cinema was without problems for me – all of the stimuli from objects flying towards the screen, the loud audio and high ceilings left me feeling very dizzy, and often had experiences of vertigo and vision lost throughout the film; but even so I thoroughly enjoyed the film and found a real sense of accomplishment that I managed to overcome all the unpleasant symptoms and stay to watch the entire film.  I could not recommend the film enough – the beautiful songs and the incredible performances of all the cast (and in my opinion, even include Russell Crowe in this) carries the audience through a number of emotions throughout the film – and yes, I cried several times through the film.

That old adage is indeed correct – “where there’s a will; there’s a way!”

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Welcome to another post for the ’12 Days of being Chronically Thankful’, a revised version of the famous ’12 Days of Christmas’ for those living with chronic illness, like me.

On the ‘6th Day of Christmas’ I was chronically thankful for…a theatre production!

Now, living with a chronic condition like mine, I am unable to attend a theatre production in person – most theatres are very big with high ceilings, as most of you are aware, high ceilings, and flashing fluorescent lights are a trigger for the episodes of severe vertigo that I often experience, and hence going to see a theatre production would make me extremely unwell.

However, a few weeks back, during one of my first trips out with my P.A, we visited my local library, and lo and behold I found a copy of a DVD of a production of ‘Les Misèrables’ that was filmed at the O2 for the show’s 25 year Anniversary.  I was so excited as  it is a show that I haven’t wanted to see for years, but because of my condition I have been unable to go and see it in London.

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As a result, I instantly decided that I would rent it from the library, and on a day in which I felt really bad, leaving me unable to get out of bed, I managed to watch it on my computer.  And I instantly fell in love with the musical – the story, the songs just everything about it!  And for a couple of hours, I forgot about how bad I felt, I was still aware of the dizziness and vertigo as they are hard to ignore!  However, I was so engrossed with the production of this amazing musical that I was able to ignore it, and just really enjoy the DVD!

And now I am equally excited for the film version of Les Misérables, starring Hugh Jackman, Russell Crowe and Anne Hathaway among others – and perhaps even planning a trip to the cinema with my Personal Assistant, it will be difficult for me being in the building but I am determined to achieve this feat!

And for that I am ‘chronically’ thankful!

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