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In Chronic Illness

What The World Learnt About Chronic Illness

December 29, 2020 No Comments

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. In December, I have written what the world learnt about chronic illness in 2020 because of the coronavirus pandemic.

What, a terrible year 2020 has been for us all.

A year that started with so much promise quickly descended into chaos. And becoming a year that will negatively impact so many. Never could we have imagined that within the first few weeks of the new year, a virus would sweep across the world, resulting in a pandemic that would disrupt life as we knew it.

2020 was the year of the pandemic as coronavirus swept around the world. It was also a year in which the world learnt about living with a chronic illness – photo by **Anna Shvets** from **Pexels**.

"What a terrible year 2020 has been for us all. A year that started with so much promise quickly descended into chaos. And becoming a year that will negatively impact so many." Click To Tweet

As we watched the news, night after night, with horror, we witnessed the death toll rising; every statistic representing a family grieving a loved one taken by this cruel and relentless virus. But the virus did not only affect those who lost a loved one because of it, or those unlucky enough to contract it but affected us all.

A Pandemic and A Lockdown

For months we did as the government asked and stayed at home, leaving the house only if necessary. Many began working from home, and parents became teachers as schools shut its doors. Nights outs were swapped for nights in binge-watching the latest offering from our favourite streaming services. Our movements became restricted as the virus continued to spread And we were all forced to adapt to a ‘new normal.’

As the pandemic worsened lockdowns became enforced as the world was forced to close non-essential shops, hospitality establishments and so on

However, for those living with chronic illness, much of what everyone was experiencing was already normal. And for us, 2020 became the year when the world learnt about life with chronic illness.

"For those living with chronic illness, much of what everyone was experiencing was already normal. And for us, 2020 became the year when the world learnt about life with chronic illness." Click To Tweet

What The World Learnt About Chronic Illness In 2020

Living With Constant Uncertainty is Exhausting and Overwhelming

When living with a chronic illness, uncertainty becomes closely tied alongside the new title tethered forevermore to your existence. One of the harder aspects of dealing with a chronic illness is the fear of the unknown. Life becomes entirely uncertain. Plans are uncertain as we struggle to grasp how we will feel from day-to-day and making it difficult to commit to anything. The symptoms that accompany illness are also uncertain, never knowing when they will next appear; or whether they will improve or worsen over time.

"One of the harder aspects of dealing with a chronic illness is the fear of the unknown. Life becomes entirely uncertain. Plans are uncertain as we struggle to grasp how we will feel from day-to-day." Click To Tweet

Uncertainty is something that is deeply familiar for those living with chronic illness, but it has also been something that has been felt throughout the world as the pandemic caused a great deal of it – photo by **Josh Hild** from **Pexels**

The current COVID-19 pandemic has created a deep sense of uncertainty and fear that many have experienced because of it. Uncertainty has raised questions including how long will it last, and whether life will ever return to normal. And such questions are ones we have asked after a diagnosis of a chronic illness. These worries and the uncertainty regarding job security and finances have been exhausting and overwhelming for everyone during the pandemic. Many people have reported feelings of depression and anxiety during these events, especially with the recurring lockdowns.

"Uncertainty has raised questions including how long will it last, and whether life will ever return to normal. And such questions are ones we have asked after a diagnosis of a chronic illness." Click To Tweet

As a result, 2020 has been the year when the world realised how living with constant uncertainty is exhausting and difficult.

Constantly Being at Home Is Neither Nice Nor Exciting

As well as the extremely overused question of, “How are you?” another question often asked is “So, what do you do?” A question that many living with a chronic illness dreads as many of us have to explain why we are unable to work. Instead of encountering judgmental comments, many reply on how enjoyable and exciting it must be to spend so much time at home.

In truth, days are spent behind closed doors enduring excruciating pain and other such horrible symptoms. But it is not just the accompanying symptoms of chronic illness that makes constant days at home difficult and anything but enjoyable and exciting. The difficulty also lies in the monotony and boredom of days spent in bed. And as pleasurable it may sound to watch as much Netflix as time allows, it soon becomes tedious and tiresome.

As the lockdown continued for several months, and we all stayed at home, the world learns that it is not a treat or exciting being confined – photo by **Matthias Groeneveld** from **Pexels**.

"But it is not just the accompanying symptoms of chronic illness that makes constant days at home difficult and anything but enjoyable and exciting. The difficulty also lies in the monotony and boredom of days spent in bed." Click To Tweet

But many people reported struggling with the confinement inside the same four walls during the lockdown. Many cried that they had enough of binge-watching entire seasons of whatever show became the latest obsession. Many wished for the pandemic’s quick ending, and subsequent lockdown so we could all return to normality. And so they finally appreciated that so much time at home is neither nice nor exciting but rather boring and monotonous.

"Many wished for the pandemic's quick ending, and subsequent lockdown so we could all return to normality. And so they finally appreciated that so much time at home is neither nice nor exciting but rather boring and monotonous." Click To Tweet

A Year of Very Little Socialising and a Case of Not Going Out

For those living with chronic illness, a popular meme exists which has become popular on social media. It is one that reads ‘The Bins Go Out More Than I Do.’ During 2020, however, it became a meme that I have seen shared countless of time and nor just by the chronically ill community. For the course of the lockdowns, the reality for the majority was this very predicament.

The reality of living with a chronic illness means that cancelled plans or the feeling of not being able to do what you’d really like to becomes the norm. There exists grief of feeling as if you are missing out on your life. As well as constantly needing to grieve the time you have lost or everything you have missed out on.

"Much of the world felt loneliness and isolation during the pandemic and recurrent lockdowns. Many have experienced pain and grief over cancelled plans and unable to see friends and family." Click To Tweet

Much of the world felt loneliness and isolation during the pandemic and recurrent lockdowns. Many have experienced pain and grief over cancelled plans and unable to see friends and family. Or the intense frustration of being unable to do what you want. All of which are too familiar for those living with chronic illness and will continue long after the pandemic has ended.

A Time of Indulging In Social Media and Telecommunication

When living with a chronic illness and experiencing intense, debilitating symptoms, it isn’t easy to visit friends and family. Long days and nights spent alone with only symptoms for company, still yearning for social contact.

Computers were used a lot during this year for keeping in touch with friends and family with frequent Zoom calls! But the world now knows it’s not a substitute for a physical hug!

Many assume that those living with chronic illness can utilise social media and telecommunication services to keep in touch with friends. And that modern technology is a favourable substitute in favour of face-to-face contact.

"Many assume that those living with chronic illness can utilise social media and telecommunication services to keep in touch with friends. And that modern technology is a favourable substitute in favour of face-to-face contact." Click To Tweet

With months and months of only being able to keep in contact with loved ones via FaceTime or Zoom the world has now realised that social media interactions are not the same as face to face interactions. And never again will people underestimate the power of a physical hug from loved ones.

Anxiety Rearing Its Head When Cutting The Ties of Isolation

From living with a chronic illness, I know that isolation is hard going, but so is escaping it. When becoming ill, or experiencing a serious flare, in many ways normality stops. There is no going out. My world consists of nothing but my bed, the comfortable sofa in the living room (when I can reach it) and my thoughts. There is only knowledge of how excruciating the pain has become or the intensity of other such abhorrent symptoms.

"When becoming ill, or experiencing a serious flare, in many ways normality stops. There is no going out. My world consists of nothing but my bed, or the comfortable sofa in the living room and my thoughts." Click To Tweet

When the flare subsides, and your body is now allowing you the chance to go out once again, the wonder of the outside world is mixed with terror. Suddenly, going outside and doing things you once did evokes anxiety and worry. It’s as if I have landed on a different planet, everything different and threatening. After being confined for so long, it can feel like you will die when leaving the safety of home. You are not, of course, and you begin to breathe slowly, reminding yourself that this is something you used to do all the time.

Many have reported feeling anxious and worried when the lockdowns have eased, and we have been able to return to some normality. Crowds of people suddenly threatening in a way that it never had before. The anxiety we feel because of chronic illness, and theirs is not the same, however. One occurs due to a sickness that already exists, the worry of exacerbating it and becoming worse. The other exists as a result of avoiding becoming ill, the fear of coronavirus affecting so many.

"Many have reported feeling anxious and worried when the lockdowns have eased, and we have been able to return to some normality. Crowds of people suddenly threatening in a way that it never had before." Click To Tweet

In many ways, 2020 has blurred the lines between the healthy and sick. We have all become a little housebound, missing the normality of our old lives. And the fear that we may never regain normalcy again. It has been a year in which the world learnt a lot about life with chronic illness. Let’s hope they remember the lessons.

"In many ways, 2020 has blurred the lines between the healthy and sick. We have all become a little housebound, missing the normality of our old lives. And the fear that we may never regain normalcy again." Click To Tweet

In Chronic Illness

Toxic Positivity: Positivity Is Not A Magical Cure

December 8, 2020 6 Comments

It can be challenging and scary to acknowledge and profess your vulnerability for all the world to see. Recently, I did just this, chronicling the worsening of my symptom of FND, and the impact that it has had on my mental health. I received many messages of support, especially from those within the chronic illness community. But, I also received comments such as “don’t worry so much, you’ll get through it,” “stay positive, it will soon pass“, and the cliched “get better soon.” While many see these as supportive and well-meaning messages of support, for those who are chronically ill, they are examples of toxic positivity.

What is Toxic Positivity?

But what it is toxic positivity? Toxic positivity describes the concept of being positive and only being positive while rejecting everything negative. It is a culture which prescribes feeling or acting happy and cheerful even if not the truth.

"Toxic positivity describes the concept of being positive and only being positive while rejecting everything negative. It is a culture which prescribes feeling or acting happy and cheerful even if not the truth." Click To Tweet

The Idea That Positivity Is A Magical Cure Is Itself Toxic

For those living with chronic illness, positivity has become regarded as a Fairy Godmother like presence. That by merely being positive and happy, we can magically cure ourselves of our sickness. And positivity alone can wondrously compel symptoms to disappear. Or worse, that surrendering to dark, gloomy thoughts is a sign of wanting to be ill.

"For those living with chronic illness, positivity has become regarded as a Fairy Godmother like presence. That by merely being positive and happy, we can magically cure ourselves of our sickness." Click To Tweet

Of course, I would love for my Fairy Godmother to exist and cast away the debilitating symptoms that have wreaked havoc upon my body and life. But they do not exist, and I am never going to get better. I would love to get better. But sadly it’s unlikely ever to happen. It isn’t pessimism or negativity; it’s reality.

That does not mean; however, I oppose the idea of positivity. In my sanctuary, I have surrounded myself with positive and uplifting quotes printed on greeting cards and postcards. Or even ceramic decorative objects adorned with an inspirational quote or affirmation. On my Twitter and Instagram accounts, I often like to share inspirational and motivational quotes when they resonate. I love, therefore to surround myself and operate in positivity whenever I can.

The positivity that I choose to exude, however, is not to deny or avoid my problems but to make them more tolerable. For the truth is, that no matter how positive and exuberant I am, it is not a magical cure for my affliction. Still, I am sick.

"The positivity that I choose to exude, however, is not to deny or avoid my problems but to make them more tolerable. For the truth is, that no matter how positive and exuberant I am, it is not a magical cure. Still, I am sick." Click To Tweet

Positive, Yes, But Still Sick

No matter how cheerful or optimistic I feel, the pain is always present. Regardless of how buoyant I may be the trembling and weakness is still severe and debilitating. Despite feeling on cloud nine, the dizziness never dissipates. Becoming a Pollyanna isn’t going to fix my broken brain. I cannot think or will myself to be and feel well; I am unable to control the symptoms that accompany FND; it just is.

"Becoming a Pollyanna isn't going to fix my broken brain. I cannot think or will myself to be and feel well; I am unable to control the symptoms that accompany FND; it just is." Click To Tweet

No matter how positive and cheerful we may be in our lives with chronic illness, still, we are sick. Photo by **Blu Byrd** from **Pexel**.

But the truth is that the ray of sunshine that positivity provides transforms into dark clouds caused by such persistent and debilitating symptoms. In reality, it is exceptionally challenging to cultivate positivity whilst in the throes of agonising pain; the type of agony that medications cannot subdue. It is hard to maintain positiveness when the world will not stop spinning; or when left bruised and injured after yet another fall. Being peppy and animated cannot suddenly compel my legs to stop trembling or make them any more robust. A smile and positivity cannot always meet the rigorous demands of life with a chronic illness. And on the worst of days, I do not possess the ability to adorn a happy face or gloss over the struggles that I continually face.

"A smile and positivity cannot always meet the rigorous demands of life with a chronic illness. And on the worst of days, I do not possess the ability to adorn a happy face or gloss over the struggles that I continually face." Click To Tweet

When I am experiencing a significant flare, I only possess enough energy to survive each day that it lasts. I am unable to find the strength to search for the ray of light that positivity radiates. And I feel every emotion under the sun bar the happy and positive ones. Instead, I am alone and isolated with only pain and suffering for company.

If Not Positive All The Time, Am I To Blame For My Continued Sickness?

And this loneliness and isolation are magnified when scrawling through social media only to be met with memes about the power of positive thinking or inspirational quotes. Such posts, and those who post them make me worry about expressing the reality of my feelings for fear of being judged or harassed for not being positive enough.

I am grappling not only with the disabling symptoms of a neurological disorder but also the guilt and shame that somehow I am the cause of my continued ill-health. If recovery is dependent on what you believe, or how hard you fight, then the failure to do so becomes just that – a failing.

"If recovery is dependent on what you believe, or how hard you fight, then the failure to do so becomes just that – a failing." Click To Tweet

After internalising the power of positivity for many years, I question whether I brought FND on myself. If only I meditated more or were more positive, would I be fully recovered, and not crying in agony? As such thoughts run through my head, it is easy to experience shame and feelings of incompetency at the idea that I have not tried hard enough to be positive.

Being sent positive and inspirational quotes such as the one above only make us question whether our negative thoughts and feelings are the reason we are still sick. Photo by **Binti Malu** from **Pexels**

It does not help me feel any better or more positive when sent cliched inspirational and positive memes of quotes. The words do not cure or even alleviate tormenting symptoms. Instead, it puts relentless pressure to be positive and cheerful, and feelings of inadequacy when failing to do so.

"It does not help me feel more positive when sent cliched inspirational quotes. The words do not cure tormenting symptoms. Instead, it puts relentless pressure to be positive and feelings of inadequacy when failing to do so." Click To Tweet

But I Have Learnt That My Thoughts Do Not Influence How I Feel

At the coal face of living with chronic illness, I have learnt to accept the reality of it. Every day, I face the symptoms. Some days are good, while others are bad, but my thoughts or feelings fail to influence the kind of day I am going to experience. Even if I could suppress the negative thoughts and feelings that arise from the challenges of living with a chronic illness, they would still exist, however. When struggling, I do not want force-feeding positive and inspirational messages, but for my feelings to be heard, accepted and validated.

"I have learnt to accept the reality of it. Every day, I face the symptoms. Some days are good, while others are bad, but my thoughts or feelings fail to influence the kind of day I am going to experience." Click To Tweet

Living with a chronic illness is demanding and challenging. A terrible thing is happening to us, so are we not allowed to feel negative about it?

Yes, positivity can make the experience easier to bear, but it is no magical cure.

But, by making it out that it is, is what turns positivity toxic.

"Yes, positivity can make the experience of living with a chronic illness easier to bear, but it is no magical cure. But by making it out that it is, is what turns positivity toxic." Click To Tweet

In Chronic Illness

Chronic Illness: A Battle of Mental Health

October 28, 2020 3 Comments

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. As World Mental Health Day fell in October, I decided to use the prompts to discuss chronic illness and mental health.

Chronic Illness: Directing a Battle Concerning Our Mental Health

In my last blog post, I recited a famous quote from the Shakespeare play, As You Like It. All the world’s a stage, And all the men and women merely players.” But if I indeed am the player or actor than what role would chronic illness assume?

After much thought, I concluded that chronic illness surely would assume the position of a director. A director, the person in charge and assumes all responsibility for every facet of a film or stage production. It can feel like chronic illness plays a similar role in the lives of those forced to live with it.

When living with a chronic illness it not only has a significant impact upon your physical health, but has one on your mental health also. Image by Wokandapix from Pixabay.

For much of the time, illness, much like a film director, has control over every facet of our lives. It has control over how we think and feel, or even whether we can get out of bed. It often drastically limits what we can do, and brings a whole lot of uncertainty to everyday life. And it has complete control over where and when the symptoms that accompany it will strike.

"For much of the time, illness, much like a film director, has control over every facet of our lives. It has control over how we think and feel, or even whether we can get out of bed." Click To Tweet

But chronic illness is not directing a cute rom-com or a cheesy comedy. It is producing a narrative depicting a battle; a battle that is not only physical but one that also concerns our mental health.

"But chronic illness is not directing a cute rom-com or a cheesy comedy. It is producing a narrative depicting a battle; a battle that is not only physical but one that also concerns our mental health." Click To Tweet

Acquiring Not Only Physical Symptoms But Symptoms Associated with Mental Health Also

Once again overwhelmed by severe and debilitating symptoms, it feels that FND is once again directing over my entire life. Trembling and weakness, particularly in my legs, have become incredibly tenacious, and the pain associated with it especially incessant. It is easy to become morose and unhappy during a surge of unrelenting and ceaseless symptoms such as this.

"It is easy to become morose and unhappy during a surge of unrelenting and ceaseless symptoms." Click To Tweet

As my legs continue to buckle when trying to stand, I can only lie down and surrender to the torment such symptoms have on my life. It is a constant reminder that I no longer have control over my illness. It’s accompanying symptoms once again prove that they play by their own rules. As I lose control over my body, panic often ensues as I feel unsafe and vulnerable. I develop a deep distrust of my body as it continually deteriorates and redefines itself as something weaker than before.

It is easy to fall into despair and hopelessness, even depression when experiencing a surge of unrelenting and debilitating symptoms—photo by Yuris Alhumaydy on Unsplash.

"As I lose control over my body, panic often ensues as I feel unsafe and vulnerable. I develop a deep distrust of my body as it continually deteriorates and redefines itself as something weaker than before." Click To Tweet

The Grief and Burden of Being Chronically Ill; Leading to Feelings of Anxiety and Depression

As the hatred and distrust of my body continue to grow, it slowly develops toward hatred of myself also. Severely limited by the symptoms that continually plague me, I begin to feel useless. Weak. Worthless. A burden. The sadness of the permanency of my condition and the lack of relief that my prescribed medications deliver weighs heavily. Many a morning, I find myself in floods of tears as the burden of being ill becomes too much to bear. Once again, the grief of being chronically sick overwhelming both my body and mind.

"The sadness of the permanency of my condition and the lack of relief that my prescribed medications deliver weighs heavily. Many a morning, I find myself in floods of tears as the burden of being ill becomes too much to bear." Click To Tweet

Anxiety and fear of the future haunt my thoughts as I worry that I continue to worsen; troubled by what FND will take from me next. The permanence of the condition and the uncertainty that it leaves in its wake leaves me anxious and fearful; anxious thoughts wrangle for attention and shining a flashlight of everything I cannot control.

"The permanence of the condition and the uncertainty that it leaves in its wake leaves me anxious and fearful; anxious thoughts wrangle for attention and shining a flashlight of everything I cannot control. " Click To Tweet

But it’s not only anxiety of the future that continually haunts me. With the increase of falls that I experience, leaving the safety and comfort of home has become daunting and anxiety-inducing.

As the emotional burdens of continue to grow, they become bigger and bigger metamorphosing into depression and anxiety. Anxiety and depression becoming other symptoms to contend with alongside the physical manifestations of chronic illness.

"As the emotional burdens of continue to grow, they become bigger and bigger metamorphosing into depression and anxiety. Anxiety and depression becoming other symptoms we are forced to contend with." Click To Tweet

Disappointing Myself Because of Limitations

As much as I experience triumphs and progress from the confines of FND, they are often fleeting. The impact of its symptoms revealing the limitations of my body and health. Things that once came effortlessly have now become difficult. I often find myself unable to get out of bed straightaway in the mornings due to the severe weakness in my legs, for example. The ever-growing limitations have made me more reliant on others. As a result, I often feel great disappointment in myself.

"As much as I experience triumphs and progress from the confines of FND, they are often fleeting. The impact of its symptoms revealing the new limitations of my body and health." Click To Tweet

girl crying while touching glass window — Living with disabling symptoms can result in anxiety about a lot of things, but especially about going out as we can never know when symptoms are going to appear. It can lead to a lack of confidence, isolation and depression.

Recently, with the increasing number of times my legs have collapsed, I have lost all confidence in not only them but going out. As a result, I have backed out of countless trips, anxious that my legs will do so while out. With every cancelled plan, the disappointment I feel toward myself only deepens; feeling not only physically weak but mentally too. Such incidents continually chip away at my self-confidence and deepening the depressed feelings also.

"With every cancelled plan, the disappointment I feel toward myself only deepens; feeling not only physically weak but mentally too. Such incidents continually chip away at my self-confidence and deepening the depression." Click To Tweet

Switching Up Thoughts of What Came First

Many of the symptoms that I experience due to FND can also be signs of conditions such as anxiety. Anxiety itself can produce physical symptoms such as shaky legs, a racing heart and shortness of breath as examples.

The lies that depression and anxiety whisper to you can lead to self-doubt and the belief that the symptoms you are experiencing are all in your head and ultimately your fault—photo by **Kat Jayne** from **Pexels**.

For me, I am well aware of this as for many years, the symptoms I was experiencing, were attributed to depression and anxiety. Such conclusions only strengthened when physical tests came back as normal. It took many years and many many hospital appointments before receiving the diagnosis of a Functional Neurological Disorder and probable Cerebral Palsy. At that defining appointment, the specialist assured me that the symptoms weren’t due to depression or anxiety; and it was not ‘all in my head’ as I had heard many times before. Instead, the depression and anxiety I experience are a result of living with a long-term neurological condition.

"Depression and anxiety regularly feed lies to you, convincing you that the symptoms experienced are your fault. They persuade me that it is indeed all in my head, and consequently, I am to blame for me being sick." Click To Tweet

But still, as depressed and anxious thoughts run throughout my brain, I begin to doubt this fact, however. Depression and anxiety regularly feed lies to you, convincing you that the symptoms experienced are your fault. During my worst times with this illness, they persuade me that it is indeed all in my head, and consequently, I am to blame for me being sick.

Chronic Illness: Forming A Battle Between Physical and Mental Health

In my history of living with FND, depression and anxiety have become adjoining features of my experience with it. But it is not only my experience. According to Paul Mayberry and a Metro article on the relationship between chronic illness and mental health, forty-nine per cent of those suffering from a chronic illness are also prescribed anti-depressants. Research has also suggested that anxiety is more common in persons with a chronic disease than in the general population.

When battling through a severely debilitating flare, it can feel as though both my physical and mental health are conspiring against me

"According to Paul Mayberry and a Metro article on the relationship between chronic illness and mental health, forty-nine per cent of those suffering from a chronic illness are also prescribed anti-depressants." Click To Tweet

Physical and mental health are inextricably linked, both working in unison and having a significant effect on the other. When battling through a severely debilitating flare, it can feel as though both my physical and mental health are conspiring against me. But, I have also learnt that to thrive, I cannot focus on just one aspect of my health. Instead, I need to work on both physical and mental health to live a happier and brighter life.

"When battling through a severely debilitating flare, it can feel like as though my physical and mental health are conspiring against me." Click To Tweet

October Link-Up Party with A Chronic Voice

In Chronic Illness

The Everyday Performance of Appearing Well

September 30, 2020 1 Comment

An Expert In Faking Being Well

A life with chronic illness, the world often indeed does feel like a stage, and I an actor within it. Every day when breaking out into the world, I feel like I am performing; acting for the benefit of others and often myself. As such, every day becomes a performance of appearing well.

"Every day when breaking out into the world, I feel like I am performing; acting for the benefit of others and often myself. As such, every day becomes a performance of appearing well." Click To Tweet

Pretending that nothing is wrong with me or my body even if it is far from the truth. I have become an expert in hiding my pain and discomfort that is blighting the present.

Just this very morning; the moment I woke, I was immediately greeted by intense, stabbing pain down my spine and legs. Legs so weakened by pain and fragility I was unable to get out of bed for a long while. When I did, however, after experiencing a severe spasm in my legs, they immediately gave way, causing a significant fall, resulting in several more bruises to add to my extensive collection.

Hiding The Anguish of Living With Chronic Illness From The World

Despite this, however, I selected an attractive outfit, applied make-up and put on my most convincing smile and left the house. And as I left the house, I put on my best performance of appearing well.

I often question, however, why I put in so much effort in hiding the truth of my anguish from others. By doing so, how will other people know to help and support me? And during recent times, there has been a great emphasis on being authentic, so should I not want to let others see me as I truly am?

Make-up is one way in which helps in my everyday performance of appearing well — Make-up is just one way in which those of us living with chronic illness use to help construct the facade that we show to the world to hide our illness and its effects.

On the worst of days, and my weakest moments, I bear witness to the reality of how sick I have become and the devastating impact that this condition and subsequent disability have had on my life. It is only then that the performance of appearing well becomes abandoned, and the truth of my existence revealed. It is only during these episodes when I can peer at myself under a microscope, confronted by the aspects of this illness that affects every decision, every breath, every day and every second of my life.

"On the worst of days, and my weakest moments, I bear witness to the reality of how sick I have become. It is only then that the performance of appearing well becomes abandoned, and the truth of my existence revealed." Click To Tweet

Lately, every day, every hour, and every minute consists of tentative steps forward, only forced to take two steps backwards. The pain often so overwhelming that it takes my breath away. Every single step feels like a struggle, and one which takes monumental effort and in which reaching the bathroom is a tremendous win. It is my daily struggle. And my survival.

It is disheartening having to acknowledge our distrust of the bodies given to us. And it is dispiriting that our lives have become centred around fighting the inevitable sickness that has befallen us or falling when we are unable to fight any longer.

The Everyday Performance of Appearing Well

That’s why we, the chronically ill perform; and why we become experts in faking being well, to escape the reality of our life that is primarily dictated by illness and to feel like we can be with you, the healthy. For a few short hours, it provides a sense of normalcy, in a life that rarely feels as such. And allowing the facade of health and joy and a brief illusion of freedom from our prisons.

"That's why we, the chronically ill perform; and why we become experts in faking being well, to escape the reality of our life that is primarily dictated by illness and to feel like we can be with you, the healthy." Click To Tweet

Performing being well and healthy although extremely challenging, especially when symptoms are severe allows a brief illusion of freedom from the shackles of chronic illness to enjoy a rare slice of normality. Image by Jackson David from Pixabay.

Because, unfortunately, we cannot return the malfunctioning body that we have inherited from the diagnosis that has blighted our lives. These faulty bodies do not come with warranties, and no amount of money is going to reverse the permanent damage that illness has inflicted on our bodies or our lives.

Our lives become centred around our diagnosis, the management of it, and the fear of what the future entails. All of which is scary and a burden to carry permanently. Which is why we snatch any chance we can to act healthy. To perform, and fake at being something that we are not. The horror of what it is to live with a chronic illness can temporarily fade into the background if we can pass for what we desperately wish we could be – healthy.

"The horror of what it is to live with a chronic illness can temporarily fade into the background if we can pass for what we desperately wish we could be – healthy." Click To Tweet

And playing at being healthy also allows us to think about something other than our diagnosis. Of course, we cannot forget as the symptoms are always there, but it’s still welcome to have a distraction from them even for a short time. It acts as a reminder that we are more than our illness. And though it may not always feel like it, there are so many more pieces to our lives than the diagnosis that it is often the most prominent part.

Illness Causes Us To Construct A Carefully Constructed Shell

So though you may see us smiling, laughing, playing and dancing while not lying or resting, crying or complaining know that it does not mean we are not suffering.

Instead, know that we are occupying a carefully constructed, fragile shell. A shell that is hiding the pain and anguish that is caused by continually living with a chronic illness. And the worse our symptoms are, the more determined we are to ensure that our performance remains convincing.

"We become adept at hiding the pain and anguish that is caused by continually living with a chronic illness. And the worse our symptoms are, the more determined we are to ensure that our performance remains convincing." Click To Tweet

The shell that we have constructed in order to pass ourselves off as being well is extremely fragile especially when symptoms are especially severe. Image by Jackson David from Pixabay.

Know that we have spent years perfecting our carefully constructed shell and performance that convinces others that nothing is wrong.

But the truth is that our entire being has become consumed by pain and fatigue. Often, all we want is to give up and succumb to the misery that we’ve locked deep inside. The suffering that which we’ve kept secret and hidden from those around us.

We hide behind a cloak of disguise and deceit, terrified of the truth of our pain and anguish becoming exposed. At the same time, we wish we didn’t have to keep such walls, cloaks, disguises, performances or excuses. We long for those to listen to our stories and experiences and help us to disrobe the facade we’ve had to create and live beneath to save ourselves from stigma, judgement, prejudice and ignorance.

"We hide behind a cloak of disguise and deceit, terrified of the truth of our pain and anguish becoming exposed. At the same time, we wish we didn't have to keep such walls, cloaks, disguises, performances or excuses." Click To Tweet

We wish we could be our true selves even if it our true, sick self.

The Everyday Performance of Appearing Well: When Chronic Illness Makes You An Expert in Faking Being Well

In Chronic Illness

What Happens When Pain Becomes Chronic

September 13, 2020 5 Comments

It is hard to imagine a time when chronic pain did not play a significant part in my daily life. That time is incredibly hard to envisage as I lay here in excruciating, searing pain.

But there was a time when chronic pain, was just a mild annoyance. To me, it was just pain. Yes, it hurt and made life difficult, but it was something that I could handle. I thought that it was normal, a sign of growing pains and not of anything wrong, especially anything serious.

Oh, how I wish I could return to the days before the pain became chronic and overwhelmingly relentless. Before I could no longer remember what it is not to be in constant, excruciating pain. Photo by Anthony Tran on Unsplash.

Oh, how I wish I could return to those days. But today, especially on one of my worst days I can’t imagine what it is not to be in pain. Or a time when it was anything but chronic. The time when the problem was considered normal and not a permanent reminder of the neurological disorder that has consumed my entire being.

"But today, especially on one of my worst days I can't imagine what it is not to be in pain. Or a time when it was anything but chronic." Click To Tweet

Now, I can no longer remember how it feels not to be in pain. Or even how long it has been since the pain has become chronic. Or a permanent feature in my life. But it has now become my reality. One that continues to flare and get worse, and to which I have to learn to adapt to time and time again.

"Now, I can no longer remember how it feels not to be in pain. Or even how long it has been since the pain has become chronic. Or a permanent feature in my life. But it has now become my reality." Click To Tweet

Often Feeling Nothing Than The Pain Itself

Yes, when living with chronic pain, there are good moments as well as bad. The problem, however, is that the bad days often heavily outweigh the good. And of course, there are the frequent awful days. The days in which chronic pain consumes the entire day, sometimes days.

"Yes, when living with chronic pain, there are good moments as well as bad. The problem, however, is that the bad days often heavily outweigh the good. And of course, there are the frequent awful days." Click To Tweet

It is on these awful days that it seems that the only sensation that I am aware of is pain. The feeling of the soft material caressing my skin or the cold of the metal of the bracelets surrounding my wrist does not register. Instead, I am only aware of the throbbing, squeezing and stabbing pains that dominate deep inside my weakened legs.

curled up in a foetal position because of pain — When pain becomes chronic, it can often seem like the only feeling we can discern is the pain that is ravaging our bodies.

The pain is constant; yes, there are times when it might be better than other days, but there is never an off-button. Living with chronic pain, the feelings and sensations that it invokes never stops. Pain is often wholly overwhelming, entirely unpredictable, and frustrating. One from which we have no respite or holiday from, however much we wish that we could.

"The pain is constant; yes, there are times when it might be better than other days, but there is never an off-button. Living with chronic pain, the feelings and sensations that it invokes never stops." Click To Tweet

Chronic Pain Is Gruelling and Exhausting To Live With

The persistent and constant unpredictable nature of chronic pain means that to live with it is gruelling and tiresome. Battling the severe crushing pain twenty-four-seven becomes your own personal Mount Everest. Every day you are forced to overcome and persevere through its harshest conditions.

"Battling the severe crushing pain twenty-four-seven becomes your own personal Mount Everest. Every day you are forced to overcome and persevere through its harshest conditions." Click To Tweet

But often, the difficulty in navigating such terrain is that it continually changes. And as the territory changes, so do what we can tolerate. No one day is predictable; one day, I might be able to accomplish the tasks I set for myself but unable to do anything at all on another. Some days I able to push myself further than my limits but on others doing so only makes the pain worse.

The persistent and constant unpredictable nature of chronic pain means that to live with it is gruelling and tiresome. Battling the severe crushing pain twenty-four-seven becomes your own personal Mount Everest. Every day you are forced to overcome and persevere through its harshest conditions.

Chronic pain continually pushes you to your limits and further pushes your boundaries. It is continuously relentless and all-consuming; a storm that cannot stop, only weathered.

"Chronic pain continually pushes you to your limits and further pushes your boundaries. It is continuously relentless and all-consuming; a storm that cannot stop, only weathered." Click To Tweet

Tempting To Hold Onto Hope; The Thought That It Will Get Better

Despite the ferociousness of chronic pain, however, I still find myself holding onto the hope that it will change. The hope that the pain will miraculously disappear never to return and life will forever be different.

However much I wish that the pain will disappear I wake up disappointed when I wake and it remains.

Each morning, however much I hope that things will be different, I am immediately met with searing, debilitating pain. And each morning I feel so sad, disappointed, and deeply frustrated that the pain remains the same; and life isn’t any different than the previous day. Heartbreakingly, of all is that when the pain becomes chronic, this scenario becomes our hellish version of Groundhog Day.

"Each morning, however much I hope that things will be different, I am immediately met with searing, debilitating pain. And each morning I feel so sad, disappointed, and deeply frustrated that the pain remains the same." Click To Tweet

The Dream of Running Away From The Pain

When pain firsts start, or before it becomes chronic, it is easy to run from it. At first, pain is benign and only slightly bothersome, so distraction is easy, and pain is something that you can handle and put up with relative ease.

When it becomes chronic, however, pain is much harder to cope with, and making distraction much harder to implement in life. At this moment, whilst in unbearable pain, I wish I could run from it; running from chronic pain is something that I always wish I could do. It’s as if by denying it’s very existence will stop it from hurting and not affect me or have the impact it does on my life.

"Running from chronic pain is something that I always wish I could do. It's as if by denying it's very existence will stop it from hurting and not affect me or have the impact it does on my life." Click To Tweet

However, I am unable to run from the pain that is destroying my legs and my life. Although I try to outrun it, pain continually reminds me that it is stronger and faster than I. Pain always catches up with me, and am reminded of its power and ferocity. Nor does time stand still while consumed by pain. No, time and life continue while pain perseveres with its destruction, and I still suffer.

"Although I try to outrun it, pain continually reminds me that it is stronger and faster than I. Pain always catches up with me, and am reminded of its power and ferocity." Click To Tweet

But my running from the pain, I am also running from the reality of my life with chronic pain. By doing so, I am unable to address my chronic pain. Only by addressing it and the FND that has consumed my life, I can move forward and find ways to live with it instead of against it.

Thoughts of Mending The Pain, Until It Becomes Chronic And Mending Can No Longer Transpire

Pain is something that everyone has experienced. We hurt or injure ourselves, and pain suddenly appears. It’s often excruciating and distressing, but there is comfort in the knowledge that it is temporary, with an expiration date. We know that our bodies will mend itself, and the pain will dissipate.

But such comfort does not exist when one suffers from persistent chronic pain. Because living with chronic pain, there is no expiration date. It is not temporary, with no end in sight.

Life becomes a battleground; us versus the pain

"But such comfort does not exist when one suffers from persistent chronic pain. Because living with chronic pain, there is no expiration date. It is not temporary, with no end in sight." Click To Tweet

Instead, pain begins to dictate our lives. It dictates whether we can get out of bed, wash our hair, leave the comfort home or even meet a friend for lunch. Life begins to revolve around pain as every decision; every task needs to consider it as to whether we can say yes to it.

"Life begins to revolve around pain as every decision; every task needs to take it into consideration as to whether we can say yes to it." Click To Tweet

We try anything and would gladly give up anything to fight and defeat the pain. It becomes a battleground; us versus the pain – a fight that we often lose and often nothing helps ease it. And so we quickly learn that mending may never be possible, so instead are forced to find ways to cope with it as best we can; anything to stop it from driving us crazy or continually stealing even more pieces of our lives.

"We try anything and would gladly give up anything to fight and defeat the pain. It becomes a battleground; us versus the pain – a fight that we often lose and often nothing helps ease it." Click To Tweet

In what ways, has your life changed when your pain became chronic?

This blog post was written for Pain Awareness Month and as part of the September Link-Up Party with A Chronic Voice.