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What can fiction teach us about living with chronic illness?
In Chronic Illness

Chronic Illness Life Lessons From Fiction

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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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Balancing The Scales Between Guilt and Rest

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Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This month, I will be discussing the need to rest and the guilt that comes with needing to do so.

Balancing The Need to Rest And The Guilt For Needing To Do So

When living with a chronic illness, we do so in an attempt to balance our own set of balancing scales. And every day, we are faced with choices; choices that will inevitably tip the balance in favour of either ourselves or to the chronic illness itself. Every decision, every activity, every chore, and errand is strategically planned in the endeavor to stave off a flare. And to keep the scales tipped in our favour.

"When living with a chronic illness, we do so in an attempt to balance our own set of scales. Every day, we are faced with choices; choices that will tip the balance in favour of either ourselves or to the chronic illness itself." Share on X

Participating in self-care, and adopting strategic pacing techniques plays an essential part in ensuring the scales remain balanced. The problem, however, that although chronic illness plays a significant role in our lives, it is not the only part. Life does not stop or pause when during a flare; life goes on, and still, we have responsibilities that we need to satiate.

When living with chronic illness we often need to balance the need to rest with the guilt of needing to do so

Justifying Taking The Time For Rest

As such, it can be difficult justifying taking time to rest when there is so much that needs our time and attention. How can we justify the time for rest and recuperation when chores and errands require attention?

Often we feel that the severity of pain and the never-ending presence of other symptoms are enough justification for slowing down. For lounging around and taking it easy while attempting to wrangle and maintain control over seemingly uncontrollable symptoms. But as these quiet and sedentary days stretch on, as well as the current flare, a surge of guilt begins to rise.

"As the quiet and sedentary days stretch on, as well as the current flare, a surge of guilt begins to rise when needing to rest and take things easy." Share on X

Although taking the time for recuperation against the backdrop of a flare is essential to our health and well-being, the overwhelming guilt and recriminations still make it difficult to justify the need to ourselves when there are so many demands for our time and attention.

"The overwhelming guilt and recriminations still make it difficult to justify the need to ourselves when there are so many demands for our time and attention." Share on X

The Starting Symptoms Which Precede A Flare

There is a tendency to push through to complete errands regardless when symptoms start to become out of control. To stubbornly ignore the start of an oncoming flare and do more than our body can handle. But, doing so, however, only worsens these ‘starting‘ symptoms and thus exacerbates the approaching flare.

We should begin starting, to see these increased symptoms as warning signs. And to start to listen to what our body is telling us. To attend and rest or participate in self-care activities when we are in need to do so.

"We should begin starting to see these increased symptoms as warning signs. And to start to listen to what our body is telling us." Share on X

Illness And Pain: A Brutal Teacher

But how do we learn the subtle signals our bodies are telling us? Experience. As C.S. Lewis once wrote, “Experience: that most brutal of teachers. But you learn, my God do you learn.” And there is no more a brutal teacher than pain and illness.

Experience: that brutal of teachers. But you learn, my God do you learn.

As much as experiencing a flare is horrendous, each one can teach us about living with chronic illness. The experience of each flare enables us to analyse the symptoms and sensations that precede an attack allows us to learn when we need to stop and rest. And as such, when resting when needed, we can learn to lessen the impact of future exacerbations.

"The experience of each flare enables us to analyse the symptoms and sensations that precede an attack allows us to learn when we need to stop and rest." Share on X

It is not only the analysis of the signs and symptoms preceding an upcoming flare that can be useful. It can also be helpful analysing those behaviours and actions that help minimise the destructive impact they cause. For instance, having a relaxing, warm bath may help alleviate pain. Or watching a favourite film or TV show can help distract from the extremely bothersome symptoms that plague everyday life.

Analysing Pain and Symptoms And Concluding On How To Deal

Whatever it may be, by analysing the results of self-care behaviours, we can then determine what and what does not help when we are in a flare. Concluding, everything which does and does not help in reducing pain or the impact of other symptoms makes coping with such intense and debilitating flares more manageable. Furthermore, interpreting the signs and symptoms that precede a flare, we can use these to know when to rest in the future. It may not help stop a worsening, however, but doing so could help minimise the impact it would otherwise have had.

curled up in a foetal position because of pain
"Interpreting the signs and symptoms that precede a flare, we can use these to know when to rest in the future." Share on X

Experience and the ongoing analysis of the accompanying symptoms of chronic illness can also help us conclude when something is not right. After living with constant illness for so long, we become somewhat intimate with our body, and know when something more is going on and need medical intervention.

Planning On Moving Forward; Planning For Future Flares

And when we know that which helps us cope, both physically and emotional we can plan for the next flare. Planning enables us to prepare suitable contingency plans for when in need of rest and recuperation for our physical and emotional well-being. And it also allows the opportunity for planning a flare kit. A flare kit is one in which contains the essentials that help calm and please. Comforting items that help you to cope during a time of suffering.

"Planning enables us to prepare suitable contingency plans for when in need of rest and recuperation for our physical and emotional well-being." Share on X

After experiencing numerous flares over the years, I have learned the importance of planning rest. And planning for the next eventual flare. Because the only certainty when living with a chronic illness is that there will be another.

"I have learned the importance of planning rest and planning for the next eventual flare. Because the only certainty when living with a chronic illness is that there will be another." Share on X

And we must also learn to let go of the guilt when in need of resting. Chores and errands can always wait, but looking after our health and well-being should always be our priority.

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‘A Day in the Life’ With FND

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This blog post is part of A Chronic Voice’s ‘A Day in the Life’ Linkup. I am answering the questions provided to share a day in my life as someone living with Functional Neurological Disorder.

In brief, illnesses and/or disabilities I have:

I live with a neurological disorder known as Functional Neurological Disorder (FND). A common neurological disorder by all accounts, but one which few people have even heard of the condition.

A disorder such as FND has a profound effect on daily life. It can affect mobility, daily activity levels, sleep patterns and so much more.

There are no structural abnormalities present in the brain of the individual with FND. The problem lies with the functioning of the nervous system and how the brain and body send and receives messages.

It is a disorder that has a profound effect on my daily life. It affects my mobility, daily activity levels, sleep patterns, and so much more.

"FND has a profound effect on my daily life. It affects my mobility, daily activity levels, sleep patterns, and so much more." Share on X

Where do you come from? How accessible is your city/town?

My life with FND occurs in a village in South Wales. Many of the amenities that exist and the nearest bus stop are more than a mile from where I live. As a result, and due to the mobility problems that occur, I spend most of my time at home. I have to rely on other people to be able to leave the house due to the severity of my symptoms.

Even if a bus stop was closer to my home, due to the seriousness of trembling in the legs, I am not able to stand for long. Therefore public transport is not accessible to me. The accessibility of where I live for me and my condition is minimal.

My first thought and/or sensation when I become conscious in the morning:

Upon waking in the mornings, every morning, I am met with the sensation of trembling in the legs. The severity of this sensation may not be the same every day, but it is always present; perhaps one of the only certainty of living with this condition. Before I attempt to get out of bed, I also take the time for a quick body scan. A scan to scope any odd sensation or gauge the level of pain I am experiencing at that moment in time. As well as noting the likelihood that the dizziness or any one of the other numerous symptoms I experience is going to be problematic for the day ahead.

"The severity of the trembling in the legs may not be the same every day, but it is always present; perhaps one of the only certainty of living with this condition." Share on X
FND can often cause my mornings to be a nonstarter; legs buckle and give way from under me with nothing more to do than return to bed until the strength and functioning returns.

As I gently pull myself out of bed, more often than not, my legs immediately give out. I end up in a heap on the fall, sometimes ending up with bruises and scrapes as a result. All there is to do is haul me back into bed and wait until the strength in my legs returns.

How long it takes for me to go from zero to functioning, if at all:

Every day is different. The length of time to go from zero to functioning varies from day to day. Generally, it takes anything from half an hour to two hours before I can get out of bed, and ready to tackle the day.

"Every day is different. The length of time to go from zero to functioning varies from day to day." Share on X

What my morning routine is like in general:

My immediate morning routine consists of taking the prescribed medications to help control the crippling symptoms with juice or a glass of cold, ice water.

The morning process of having a shower and getting dressed takes some time because of the crushing pain and fatigue that exists. As well, of course as the constant trembling and shaking in the legs. A shower stool is a necessity when having a shower, therefore, and rest is a necessity before being able to get dressed.

Best and worst times of the day in terms of pain, fatigue, etc:

Mornings, therefore are the worst times of the day in terms of pain and fatigue. The lack of physical movement and any pain medication during the night, making the muscles feel weak and lethargic. Nights aren’t any better either, however, as the busyness of the day and the physical activity takes its toll. It often causes debilitating pain and weakness, particularly in the legs, making sleep difficult to encounter. As a result of not getting restorative sleep the night before, fatigue is once again present the next day. The cycle continues.

curled up in a foetal position because of pain
Both the mornings and nights are tough when living with chronic pain

The late morning and early afternoons are then the best times of day, and although pain is always present, the decrease in fatigue means that I am able to get the most done.

What I consider a daily self-care must do:

I consider taking the time for a nice, hot shower a daily self-care must do. It allows me to ‘wash away’ yesterday’s troubles out of my system and preparing me for the day ahead. The time also allows for some pampering by using luxurious products which help me to look and feel good. It is important to look after mental health just as much as the physical side when living with chronic illness.

"A hot shower a daily self-care must do. It allows me to 'wash away' yesterday's troubles out of my system and preparing me for the day ahead." Share on X

The household chore I have the most trouble with:

While my parents are at work, I do the household chores that I can still do and does not use too much of the limited energy I have budgeted for the entire day. Ironing is the household chore I have the most trouble with due to the length of time required to stand. Doing so takes a considerable amount of energy; as I stand, I can feel the force and strength of the trembling inside my legs. On some occasions, my legs have given way in the middle of ironing.

A task I wish I had more help with:

If there was a task that I could have help with then I would choose ironing as it can be dangerous with unpredictable legs like mine. Or a cleaner to help around the house would be great too.

The part of the day I like best:

My favourite time of the day is between 2.00 and 3.00 in the afternoon after my Mum returns home from work. It’s a lovely time of the day where we can catch up with each other’s goings-on. It also allows time to catch up on missed programmes, which as a TV addict I very much enjoy.

What’s breakfast, lunch and dinner typically like:

How do I manage when it comes to food and life with FND? Due to the overwhelming pain and nausea that accompanies it in the morning, it means that I rarely eat breakfast. If I do, then it is something light such as toast with a little peanut butter. Or on the days, where my legs are really bad and I am hungry than I grab a breakfast bar.

Due to nausea I don’t often have anything for breakfast but if I do I like something light such as peanut butter on toast

Lunchtimes are often problematic, as my legs can be bad after completing chores, so I often have whatever my parents have bought or made for me from the fridge.

A kitchen can be a dangerous place when living with sudden and unexpected falls. For this, I am lucky that I am still able to live with my parents, and Mum is often in charge of the cooking. If I do any cooking, I need a perching stool and supervision.

How do I unwind for the evening?

In the evenings I usually unwind by watching my favourite TV programmes. Or if there is nothing worth watching a film that we haven’t had a chance to see yet. Failing that and when I am spending time on my own, I like to unwind by catching up with social media and reading blogs and other health articles which I schedule to share on my social media channels.

Watching TV or a film is my favourite way to unwind during the night and helping to relax before bed

I have recently begun to implement a strict routine for the nights in order to help me sleep better at night. I keep to a strict skincare regime, take my medication and read the latest book I have on the go before switching the light off.

Are you are able to do any exercise? If so, what do you enjoy and does it help with managing your pain?

Recently chronic pain has become a real problem for me, and as such exercising hasn’t been something, I’ve been able to do. I did use to regularly attend a gym, which had toning chairs and beds, and a recumbent bike which I loved to use. Unfortunately, it has since closed. But I am soon hoping to start using a pilates machine with a rebounder that we have in the house to improve my fitness and stamina.

Things that help me de-stress in my every day life:

To de-stress in my everyday life, I like to read, listen to music, especially uplifting, happy songs, and to create such playlists can be a joyful past time in itself. I also enjoy puzzles, especially code words, and have a book of them on my bedside table. They are a great distraction from the crippling pain that invades my body.

People I see most often and my favourite activities to do with them:

The people I see most often are my parents with whom I live, and my carer who is employed to take me out twice a week. With limited mobility, I love to visit coffee shops and enjoy time away from the house. On bad days, I do so with a book to distract me from the crippling pain. Or visiting garden centres and enjoying being surrounded by nature and beautiful flowers.

It is also lovely just to be able to chill out at home, doing what we love to do on our own. Or, spending time together watching TV shows that we all enjoy, or a film that we all can agree on.

If you got ‘normal people sick’, how much impact does that have on top of things?

I am lucky that I do not suffer from ‘normal people’ sickness that often, and I find it as more of a hindrance than anything. It causes extra fatigue on the fatigue that already exists, which make any functioning at all very difficult. It also takes me longer to recover from being sick than it would normally.

If I could leap out of bed pain free for ONE day within my current environment and circumstances, I would…

If miraculously I could leap out of bed pain-free for one day, I would take advantage to see how it would feel to live a ‘normal’ life. A packed and productive day of activities to sample what life would be like if not limited by pain and illness.

Having a pain free day would certainly be cause for celebration and jumping for joy! How would you spend such a day?

I would also love to go window shopping in one of my favourite places without the worry of legs giving out or a pain flare. And then to end this miracle of a day, a celebratory dinner at a favoured restaurant. Eating out is something that I love, but due to the restraints of chronic illness, isn’t something I can always do.

Is there anything else you’d like to share about daily living with chronic illness/disability?

Many people assume that every day is the same when living with pain and illness. That our abilities and limitations are stable, remaining the same day in and day out. However, pain and other symptoms that accompany chronic illness fluctuate.

Some days I may only experience one or two symptoms of FND. On other days I may complete the whole set. Life with FND or any chronic illness is like opening a box of chocolates every day; you never know what you are going to get or what is in store for the day. It’s an unpredictable and uncertain life.

Life with FND or any chronic illness is like having a box of chocolates every single day; you are never going to know what you are going to get!
"Life with FND or any chronic illness is like opening a box of chocolates every day; you never know what you are going to get or what is in store for the day." Share on X
A Day In The Life With FND
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Uncertainty of Living With Chronic Illness

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Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. This month, I have used the prompts to look at the uncertainty and unpredictability of living with chronic illness.

The Repetition of Illness and Its Symptoms

We all, to some extent, live with uncertainty. None of us know what the future holds, and it can be exciting living life with a degree of spontaneity. When living with a chronic illness, and chronic pain, living with such uncertainty can be anything but thrilling.

"It can be exciting living life with a degree of spontaneity. When living with a chronic illness, and chronic pain, living with such uncertainty can be anything but thrilling." Share on X

We may not know when symptoms are going to return, but the only thing that we can be sure about is that they will return.

Living with uncertainty feels like being trapped in an endless cycle of pain and fatigue and other troublesome symptoms. There are some periods of respite in between, although they never seem long enough. And just as we are enjoying this quiet moment of pause, the symptoms repeating. There is a constant repetition of symptoms.

Living with a great deal of uncertainty is very much like driving on a road with no road map and with no idea of the direction we are headed. And also with no idea where we will end up!

Pain and illness have their logic. They both play by their own set of rules. And when we thought we had learned their rules, they suddenly move the goalposts. And we have to learn a whole new set of rules. For instance, when living with pain and illness, we need to learn how to pace so as not to exacerbate or trigger the symptoms that accompany such conditions. But sometimes the limits that have worked to help stave off pain or fatigue no longer work, and left wondering what now?

"Pain and illness have their logic. They both play by their own set of rules. And when we thought we had learned their rules, they suddenly move the goalposts. And we have to learn a whole new set of rules." Share on X

The Wondering Questions of Uncertainty and Unpredictability

A new diagnosis leaves several questions in its wake. We are left wondering how to interpret these symptoms. And wondering what these symptoms may be trying to reveal. In the wake of a diagnosis, you wonder about all the possible treatments available and whether they will be effective. We begin questioning the reactions and opinions of others when learning of our sudden new reality. Most of all, however, we wonder about our long-term prognosis and how the condition will affect our long-term plans.

"We are left wondering how to interpret these symptoms and what they may be trying to reveal…The uncertainty and unpredictability of pain leave us wondering and pondering many questions." Share on X

When pain returns or suddenly arrives, we are once again wondering and attempting to identify from where it appeared. Have I sat or slept in an awkward position? Could I have done something to prevent it? Who knows. The uncertainty and unpredictability of pain leave us wondering and pondering many questions.

There are a lot of questions that are left us to wonder when diagnosed with a long-term health condition. A lot of questions that often have uncertain answers

All in all, being diagnosed with a chronic illness is enough for turning life entirely on its head. After such a pronouncement, there is a before and after. There is a time before the illness and after the illness. A whole new world that we have to learn how to navigate, and a new language we need to learn how to speak.

"There is a time before the illness and after the illness. A whole new world that we have to learn how to navigate, and a new language we need to learn how to speak." Share on X

Pain and Illness Requires Turning Into Uncertain Roads

This new world of chronic illness and learning to live with symptoms is one filled with uncertainty. Every day requires turning into unknown roads uncertain of what we will find there. After waking up in bed, after a restless night starts with a body scan. A way of determining what hurts and wondering what today will bring in terms of symptoms.

We cannot even relax for a minute, however, as often what we think will be a low pain day or one with minimal symptoms doesn’t last, hope extinguished as they suddenly make their presence known.  Just when we thought we had reached a turning point in regards to our health, something else affirming its unpredictability.  Reiterating the uncertainty of life, controlled by illness and its accompanying symptoms.  

Getting Used to Living With Uncertainty

Uncertainty of living with a chronic illness is challenging to have to learn to live with during our daily life. Upon getting up each morning, we reflect on the uncertainty of the day ahead. We can never be confident or complacent that the day will unfold as we think it will. But unfortunately, uncertainty is something that we have to learn to live with every day.

black and white photo of woman staring out of a window
"Upon getting up each morning, we reflect on the uncertainty of the day ahead. We can never be confident or complacent that the day will unfold as we think it will." Share on X

Getting used to uncertainty, there is a need to learn to use humour when symptoms disrupt our plans for the day. Or to use it to deflect from the often embarrassing consequences that some symptoms can have. For instance, learning to laugh when legs suddenly give way often causing very public falls. It’s also essential to learn to forgive ourselves when such events occur, as often we are unable to control the pain or fatigue that our bodies create.

Desiring Certainty and The “Can” In Life Ahead

Yes, I often desire a more certain and better quality of life. Desiring the destruction of the giant question mark that illness has placed in the road ahead of me. Desiring the ability to make concrete and certain plans, without the constant worry whether my health or symptoms will ruin them, forcing my hand to cancel or postpone them.

Woman carefree and happy existance
I want to embrace the times that I “can” instead of those times that I “can’t.” To become a person that battles a chronic illness rather than someone who suffers from it.

I want to desire and feel the excitement of times that I “can” instead of the bitter disappointment for the times that I “can’t”. To take control and become a person who battles a neurological disorder rather than someone who suffers from such a condition.

"I want to desire and feel the excitement of times that I "can" instead of the bitter disappointment for the times that I "can't". To become a person who battles a neurological disorder rather than someone who suffers from one." Share on X
Uncertainty of Living With Chronic Illness
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In The Mirror: Body Image and Chronic Illness

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The middle of May saw Mental Health Awareness Week hosted by the Mental Health Foundation. The theme this year focused on body image; how we think and feel about our bodies.

"According to the Mental Health Foundation, 30% of all adults felt so stressed by body image and appearance that they felt overwhelmed or unable to cope." Share on X

Social Media And The Influence On Body Image

In the age of social media, we are more aware than ever of how our bodies look. In an age where we are comparing our bodies with others. More aware than ever regarding the idea of perfection. Seemingly more aware than ever when our bodies do not fit in with the social norm.

"In the age of social media and apps such as Instagram we are more aware than ever of how our bodies look…and when our bodies do not fit in with the social norm." Share on X
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Formal nights are a lovely excuse to get dressed up in a fancy dress and feel a little bit glamorous, especially when you are battling the effects of #chronicillness and #chronicpain which makes you feel anything but glamorous and elegant. You can’t see it but I am in a terrible #painflare forced to take painkillers and so also battling terrible #nausea!! Oh, the wonders of #makeup!! Big thanks to @simplyabbyrae from the @benefitcosmeticsuk counter in #Boots for helping me pick out some lovely products and tips on how to apply!! #spoonie #chronicillness #chronicpain #chronicillnesswarrior #chroniclife #neurologicaldisorder #FND #functionalneurologicaldisorder #pandoaurora #formalnight #cruising #travel

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Every one of us has flaws; everyone has insecurities and things they are not happy with regarding their body or appearance. I, myself, for years, have not felt satisfied with what I see when I look into the mirror. For years, I have wished that I was prettier, thinner, or that I didn’t need to wear glasses all the time. When looking at my reflection in the mirror, I hear the cruel remarks and gibes from others; comments which have since stayed with me. Comments which still affect my self-esteem and how I think and feel about my own body and appearance. It’s probably why that there are not many selfies or photographs of myself in general on Instagram; because I am insecure and unhappy with my appearance.

"For years, I have been unhappy and insecure about my appearance and body image.  A reason why there is a lack of selfies and photographs of myself in general on Instagram or even on my phone." Share on X

Illness Can Cause A Hate Relationship With Our Bodies

When diagnosed with a chronic illness, the insecurities concerning body image grow exponentially then we could ever think possible. We develop more of a hate relationship with our bodies, stronger and unyielding to change than ever before. When living with a chronic illness we experience pain, discomfort, and loss of control. All of which also can lead to a change in physical appearance. And which can have a detrimental effect on self-esteem and how we feel about our bodies.

"When living with a chronic illness, we experience pain, discomfort and a loss of control. All of which can lead to a change in physical appearance. And which can have a detrimental effect on how we feel about our bodies." Share on X

The Influence of Illness On How We View Ourselves and Our Bodies

It is hard to love or feel positive about a body that seemingly no longer listens to my signals. A body that is continuously taunting me, letting me know of its dominance with its unpredictability. One which I do not know what it is going to do from one moment to the next. A body which I should have the utmost trust in, but only reminds me that it plays by its own rules. A game that I appear to have no control in, and which the symptoms have the upper hand. It continually likes to keep me on-and-off my toes, both figuratively and literally! As I make plans and wanting my body to help me fulfill those plans, my body, however, often have other aims, having a mind of its own.

Chronic illness causes many insecurities and unhappiness regarding both appearance and body image as the symptoms associated with it ravages our insides and sometimes even outward appearance
"It is hard to feel positive about a body that reminds me of its dominance with its unpredictability. A body that reminds me that it plays by its own rules. How can we love a body that treats us as it's own worst enemy?" Share on X

How can we love a body that treats us as it’s own worst enemy?

As the limitations caused by symptoms increased, becoming more disabling. The effects of such symptoms gradually became more visible, causing falls in public; the pieces of my already fractured body image became even more broken. Broken pieces scattered, and seemingly nothing I could do to repair the damage and put the pieces back together again.

Such debilitating and unpredictable symptoms can effect self-esteem, making us insecure and feeling like a prisoner in our own bodies

The shame and embarrassment when such incidents only add to the insecurities surrounding my body image. It affects my self-confidence, such as the worry about what others may think. But also, it affects my confidence regarding venturing out of the safety of home. No longer able to trust my failing legs, and the unpredictability of when such attacks will occur only adds to this — a feeling of being stuck inside an unreliable body; becoming a prisoner in my own body.

"No longer being able to trust my legs and the unpredictability of when such attacks will occur only added to my negative body image. And a feeling of being stuck inside an unreliable body; becoming a prisoner in my own body." Share on X

Learning To Love Ourselves And Embrace Our Flaws

But, unintentionally the neurological disorder has become stuck to my future, and which refuses to leave. A union that I do not want or asked for, but am unable to divorce.

"Life with a neurological disorder has become stuck to my future, and which refuses to leave. A union that I do not want or asked for, but which I am unable to divorce." Share on X

I need, therefore to learn to accept the constant presence that the condition has and will continue to have on my life. I need to remember that, as difficult it may be, that my body, with all its flaws and complications, is also my permanent home. A home that with all its problems and the insecurities it causes I need to learn to embrace and love. To look beyond what my body can no longer be able to do, or have difficulties with to what it can still do for me. To remember how far I’ve come and what I’ve achieved despite the obstacles created by illness. And to remember that despite everything, everything that our bodies throw at us, we are still here. Surviving. And one that is still keeping me alive.

"To develop a more positive body image, I need to look beyond what my body can no longer be able to do, to what it can still do for me. To remind myself that I am still here, and my body is still keeping me alive." Share on X

Perfection Is Merely A Social Construct; Not Reality

It’s easy to look at social media, such as Instagram and feel dissatisfied with our apparent flaws and blemishes against the idea of perfection on our screens. But, the reality is that perfection does not exist. Perfection is merely a social construct; no one or nothing is perfect. The images we see online have often been airbrushed. Or the many filters that are available on our favourite apps have been used to make the photograph worthy of being shared on social media.

"Perfection does not exist. The images we see plastered on social media have been airbrushed, or filters have been applied to them to make the photograph worthy of being shared." Share on X
The images we see on social media, such as Instagram have often been airbrushed or put through popular filters that give us an impression of perfection. Perfection, however, does not exist

Learning to love yourself is not an easy process, insecurities, and negative feelings toward my body will always be something I’ll need to fight. Body confidence and body positivity is something that I will have to continue working toward. I am not sure how, but I am sure I will eventually get there. But the more I read, the more I learn that everyone hides insecurities about their body and the image they put out into the world. Nobody is or looks perfect, and every one of us hides flaws or blemishes that they think makes them somehow less than.

Quote by Steve Maraboli in a white speech bubble with a pink marble effect background. The quote reads "There is nothing more rare, nor more beautiful, than a woman being unapologetically herself; comfortable in her perfect imperfection. To me, that is the true essence of beauty."
"Everyone hides insecurities about their body and the image they put out into the world. Nobody is or looks perfect, and every one of us hides flaws or blemishes that they think makes them somehow less than." Share on X

There are many quotes that state that authenticity and being yourself is the purest kind of beauty there is. The moral of the story, therefore, is to be true to who we are, and embrace who we are, flaws and all!

"To learn to be more body positive we need to learn to be true to who we are, and embrace who we are, flaws and all!" Share on X

How do you practice body positivity and being kind to yourself?

In The Mirror: Body Image and Chronic Illness
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